Ethan Neel Desai

Discover The Dinosaurs

2012-01-22T22:27:00.000-05:00

E is loving Dinosaurs lately so we were excited to find that 'Discover the Dinosaurs' is in town at the Convention Center this weekend. E zoomed around the exhibits using his walker and named each of the big animated Dinos for us. I had to read the signs, but he knew them all by name. He did not get this from me, obviously. I still can't pronounce most of them. :) I wish I had pictures of him next to the Dinos but he decided it was best to keep his distance. He yelled, 'Dinosaur going to eat you' and ran many times. I think we may need to cut back on the Netflix Dinosaur movies.

It was crowded and full of Toddlers so I was a little nervous, but the walker was just enough to draw attention to E, so he didn't get knocked over. Once we finished with the exhibits we ventured into the play area. E immediately noticed the huge bouncy house/slide/climbing complex at the end. They were blaring music and the line to enter it stretched almost the length of the room. We tried some of the lower key activities such as playing in Dino Land, coloring, watching a Dino movie, etc. He lasted all of 10 seconds at each station. I thought we found a winner at the Digging for Dino's station. E loved this and played there for a while.

Checking out the little Dinosaurs in Dino Land

Digging for bones

Look what I found

The look I received when I asked him to smile. Haha..he said 'I digging, MOM'. His teen years are going to be fun.

Eventually I had to remove him when it got crowded and after repeatedly asking the larger and older kids to stop reaching over/under E and stop nudging him over. I realize that the parents of these children probably didn't even notice and they have no idea that if 'Little Billy' slips and falls on E or knocks him down while crowding into his personal space, this could easily result in a broken leg, arm, wrist, etc. I certainly am aware of this scenario and it plays through my head each time I see 'Little Billy' take a step closer. Instead of looking like a crazy lady and just announcing that everyone needs to step away from my child, I hover and try to anticipate 'Little Billys' next move. Today, I nearly chose the crazy lady route. It does get irritating when the parents just sit there and do nothing. Anyway, it got out of hand so we had to move on.

We were directly across from bouncy heaven at this point and as much as we had tried to steer him away from the attraction, he darted over to the exit (no lines...smart kid) and tried to sneak under the rope. We had to drag him back and explain that he could not go into Bouncy Heaven. The look on his face and the tears that followed broke my heart. We chose to leave the event, with both Ethan and I in tears. E was crying because he really wanted to play with all of the other smiling screaming kids who were bouncing, dancing, sliding. I was crying out of frustration/anger/sadness because this is first time he REALLY REALLY wanted to do something and we had to say No for safety reasons. I have said No before to certain activities but E is usually easily satisfied with another activity....not today. We always focus on the fun activities that he CAN do, and that typically works well for all of us. This just wasn't good enough today, for either of us. I wanted him to experience Bouncy Heaven just like all of the other hundred kids waiting in anticipation or having so much fun in there. :(

So, we both had our tantrums and now I'm trying to find a safe alternative or better yet a Bouncy Heaven that is not so crowded where we can keep our distance from others and let him bounce away. Feel free to comment with ideas, especially if you live locally and know of a place we can go!!!!

Determination!

2012-01-03T09:57:00.000-05:00

One day shy of 1 week post femur fracture and he is back up on his feet, walking using his walker. He never ceases to amaze me. :)

Chef Ethan

2011-12-31T17:20:00.000-05:00

At 3 days post femur fx, I found Ethan doing this:

He still complains of pain on occasion, but seems to be doing much better. He is scooting all over and has tried standing multiple times. He can't really put much weight on that right leg but nothing stops this guy. He is getting on with it, and so are we. :)

Fractured femur

2011-12-28T18:17:00.000-05:00

We knew this day would come but I don't know that you can ever truly be prepared. We try to be prepared. We have a splinting kit, medicine, emergency phone numbers, and try to stay calm. We have had a few close calls in the last several months, but this one seems to be the real thing, UGH!

Ethan was running across the kitchen floor last night and fell like he has a thousand times before, but this time he screamed. I scooped him up and tried to calm him down. It took a few minutes and he was holding his right leg the whole time. Once he calmed enough to talk he said his leg hurt where he was holding it. I gave him pain meds and waited for them to work before moving him. He wanted to play so we sat on the floor and he decided he needed to lie down with his right leg tucked under him. It must have been comfortable for him because he refused to move for an hour.

I was ready to burst into tears so we called another OI Mom and asked her opinion on splinting him. Since he was calm she suggested to try ace wrap first and then if he wasn't comfortable splint him with something stronger. My sister and nephew were here so they distracted him while I double ace wrapped his leg. He did great but was still really uncomfortable with just the ace. Around 3-4 hrs after the fall I got him properly splinted and prayed I did it right! I have splinted him this year after surgery and the post op splint was causing pain so I created a new one, but it is different when dealing with a fx. I feel like a newbie in this area. We have had 3 rodding surgeries now and I know what to expect and how to handle that, but Ethan hasn't had a major fracture for 2.5 years.

Ethan slept well last night with me and my sister, waking only once. He did sit in his wheelchair for about 10 min today and wheeled around but really he is uncomfortable being moved at all, so I am trying to limit movement as much as possible.

What I was not prepared for is the questions. Ethan does not understand why a simple fall caused a big owie. He keeps asking what happened to his leg, if he can chase Scrubby now, if he can stand up, can he take off the splint, why his toe toes are stuck, etc. At his age, I'm not sure how much he understands. I have never really tried to explain to him that he has fragile bones. He understands when he has surgery that he gets owies and we explained it is to make his legs stronger and to fix his bones. Some part of me doesn't want to tell him he has OI. I don't want it to change how he views himself. I just want him to be the happy, carefree kiddo he has been. I suppose he will have to learn what his limitations are but I don't want him to be afraid. OI is such a roller coaster. I was initially very sad and hurt because Ethan was upset, now I'm just angry and would like to punch OI in the face.

Meet Me

2011-12-07T19:46:00.001-05:00

The OI Foundation has a new page on their website called 'Meet Me'. It will feature individuals with OI and give a quick background.

Ethan's story is up in the 'Meet Me' section right now. We have already gotten positive feedback from other parents who read it. I think it is great that our little man can inspire others as he inspires us in so many ways.

OI Foundation - Meet Me

Loves to Sing

2011-12-07T19:45:00.001-05:00

Ethan has really been enjoying singing lately and as his Mom of course I think his singing is probably the cutest thing I have ever witnessed. :) I thought I would share with the rest of you.

Working on a Masters in Manipulation

2011-11-29T20:43:00.001-05:00

When he perfects this technique I'm quite sure he will never hear the word 'NO' again.

Back up on his feet

2011-11-27T17:51:00.001-05:00

The day before Thanksgiving Ethan decided to take a stroll using his walker and he hasn't looked back since.

Now he is running with his walker and walking some on his own as well. In another week he should be back at full steam. :) He has followup X-rays this week and I assume we will see good healing since Ethan is comfortable enough to walk.

4th FD rod

2011-11-20T11:13:00.001-05:00

Ethan is 2 weeks post op from what is hopefully his last surgery for a few years. (crossing fingers, knocking on wood, praying, and whatever else may bring us good fortune). He now has FD rods (expandable rods) in all 4 of the long bones in his legs. The only bad news we received is that it looks like the rod in his left tibia may not expand. :( It is not definite at this point but Dr. E thinks it is unlikely to expand. He said this happens 30% of the time, with it being more likely the younger the child. The bones are softer and do not hold the screw as well. So, in the future there is an option to place a pin to keep it in place BUT this adds a risk of having the pin migrate. Either way, Dr. E thinks we will get at least 2 years out of the rod even if it doesn't expand.

Before surgery, Ethan attended the yearly OI Clinic in Omaha. It is a comprehensive visit where he gets X-rays, dexa scans, hearing screens, as well as seeing a surgeon, geneticist/peds to discuss PAM dosing, Dietician, PT, OT, Dentist, and probably more that I can't remember right now. In summary, it went well. Ethan's bone density (DEXA) z-score was exactly the same as last year -1.2. This is still good, considering he has OI. It means he is 1.2 standard deviations below normal bone density (osteopenic). Based on this. Dr. L recommended we leave his PAM dose as it is. The x-rays showed that Ethan had a compression fracture in his spine that we did not know about. We are not positive when it happened, but believe it must have occurred when he was pushed down at Preschool. Yet another reason I am glad we chose to remove him and really it is best that I am no longer in contact with any of them as this certainly caused my anger level to hit the roof. Thankfully the PAM will help to re-plump the vertebra over time. Lastly, the Dentist noted that Ethan's top teeth are starting to wear down as well. She did agree to see Ethan as a patient since we are having trouble finding a local Dentist willing to cap Ethan's teeth. So, if it comes to it, we can take him to Omaha and have the dental surgery there. That is such a relief!

Freak snow storm in Omaha

Made a Target run before OI Clinic and surgery and Ethan loves to hide in the clothing racks. The belts do not provide much cover. ;)

Mr. Mischievous. We chased him all over this store.

Post op

Holding Mommy's hand. The first thing he asks for is Mommy's hand. <3

Playing with Thomas

Happy to sit up and play with toys

The day after discharge we went to the zoo. In case you're wondering, the snake is not real. Nana didn't know that though. Sent her the pic and told her it was. Haha.

Back at the hospital keeping another Mama company while her son was in surgery. Ethan and Shannon were discussing the fishes in the tank.

One of the reasons we go to Omaha. Dr. E playing with E and his toys in the surgery waiting room. He just finished E's buddy Fin's surgery and took the time to hang out on the floor with E and play. <3 this man.

Ethan is recovering well from his latest surgery. He has already tried to walk using the cam walker boot at only 1.5 weeks post op. It hurt and he had a rough night afterwards so I'm ready to duct tape him to the floor so he can heal because he wants to go go go. He should be back up and walking in his walker by Thanksgiving if the past is a good indicator. For now we are enjoying the snuggles, dancing, crafts, and floor time since he is not as mobile.

Our most recent craft - salt dough ornaments that we made and painted.

Trick Or Treat

2011-10-31T20:54:00.003-04:00

We went trick-or-treating on our street for the first time. :) Ethan started out strong and wanted to walk, even walking up some steep driveways. He refused to say trick-or-treat but had no problem sticking his hand in the candy bowls to pull out the treats. We didn't make it as far as planned because our sharkey got tired. He decided to kick back in the wagon and do his trick-or-treating and then we returned home a little early.

Time to get candy

Posing with Hanna and Emily

Rawr, I'm a shark

Toddling down the street. He wanted to walk up to each house and pick out his candy.

Eeekkk.....shark!

too cute to be scary

loved checking out the jack-o-lanterns

Sharks don't hold hands, Dad!

Posing with some of the neighborhood kids. He had his eyes on a little doggy.

sharkey tail

running on to the next house

E and Mama

Ethan was staring in wide eyed wonderment. I'm not sure if he was scared or intrigued.

Halloween

2011-10-31T00:25:00.001-04:00

Tomorrow is Halloween and we are getting really excited. I was beginning to worry that Ethan was going to refuse trick-or-treating as he had no desire to put on his costume at all. Well last night he started getting into the right frame of mind.

I can't wait to get some pics of him trick-or-treating tomorrow. I'm biased, I know, but he is seriously the cutest shark EVER!

Preschool Dropout

2011-10-30T23:51:00.001-04:00

A quick update on the Preschool situation: Ethan has been officially withdrawn. :( I won't bore you with the details but we came to the decision to withdraw Ethan because we did not feel as if we could trust the school after such a horrid response to what he had already endured. We felt that we had done all that we could as far as making our concerns known and standing up for what was right but the lack of response and proper understanding from the School was just too much.

Instead we came up with an alternative that has been working out fabulously. Ethan has been keeping the same hours and attending his very own private 1 on 1 Preschool with his aide Chelsey. We meet Chelsey at the library and use the resources available there. She has done a fantastic job of gathering tools and following a curriculum just like what Ethan was doing. He also enjoys story time both days so he gets some interaction with other Toddlers. Each day when I pick him up I have to convince him to leave. He is truly enjoying it. :) I know I am much more at ease as well. I could not have handled sending him back to school knowing that he might get hurt again.

Dancing and spinning during story time. :)

Bullying

2011-10-03T22:35:00.001-04:00

Yep, my 2 yr old is being bullied. :( Ethan started at a private Pre-school 2 mornings a week a few weeks ago. I thought it would be a great opportunity for him to socialize with other kids, learn new things, and have a little time away from me to work on independence. The class consists of 9-10 boys (I can't remember if they all ended up enrolling) and two of Ethan's friends are in the class as well (Matty and Max).

Everything started out quite nicely and Ethan came home singing new songs and told me he was having fun. To keep Ethan safe, we hired his babysitter to attend with him. Chelsey is there to change his diapers, keep him safe on the playground, and to assist him when needed, but really since the class is full of 2 yr olds, her biggest job is keeping the other kids from falling on Ethan, or playing too rough, etc.

I had prepared myself that an accident could happen, or Ethan could get hurt from being his wild little self. I did not expect to be dealing with another kid actually trying to hurt Ethan.

Last week when I picked E up, Chelsey informed me there had been an incident. Ethan had surgery 4 weeks ago to place rods in his legs and is still recovering (although doing quite well). As T approached Ethan, Chelsey reminded him to be careful of Ethan's legs. Ethan was sitting on the floor. T proceeded to lift his leg and started to lower it over Ethan's legs, intending to stomp on him. Chelsey was able to block him, so Ethan wasn't hurt this time. I got angry that T tried to purposely hurt Ethan and intended to discuss it with E's teacher this week. I did not get a chance to do that this morning and when I picked E up today the situation had definitely gotten worse.

The kids transfer to other rooms during the 3 hrs they are in school. Ethan was using his walker to walk back from Art class with Chelsey by his side. The teacher and the aide had gone into the classroom with the other kids and Chelsey thought she and Ethan were in the back of the line. She tries to keep him back a little so the other kids do not trip over his walker or bump him. Apparently T was lagging behind and he came up behind Ethan and pushed him down. Ethan fell forward and the walker fell over on him and apparently his legs were under it at an odd angle. Ethan screamed and cried and was so upset he was shaking. :( This all took place 15 minutes before I was due to pick him up and when I got there he was calm. I assumed that since he was calm, he was not hurt. Chelsey did mention that Ethan wouldn't stand or use his walker after this happened. His cries were loud enough to attract the attention of the Director.

Once I heard all of this, my blood was boiling. I took Ethan and walked down to the Director's office and asked her what she was going to do about T. I also explained that this was the 2nd incident. The Director said she was aware of the situation and would be contacting T's parents but she needed to talk to the Teacher to get more details. I have no idea yet what the outcome will be but needless to say, we want this kid away from Ethan.

We are not sure if Ethan's foot is broken, but he is definitely having pain issues and cannot walk on it like he was before this incident. I am guessing it is maybe a crack or a sprain. Either way, if he is still having issues in the morning we are going in for X-rays. I will certainly be notifying the school about his injuries as well.

I really hope we do not have to remove Ethan. It certainly wouldn't be fair that he would have to miss out playing with his friends and leave Pre-school because of a bully, but we also have to think of his safety. I'm praying for a favorable outcome from the school. I will post again once we have more news.

Look Who's Walking!

2011-09-25T19:47:00.000-04:00

Ethan is now almost 4 weeks post op. We had a followup Ortho appt on Thursday for xrays and his rods look good. Healing has started but the bones are nowhere near healed. Despite this, Ethan has been up and taking a few steps last week while holding onto our hands.

This past weekend we went to a Camp in Southern, KY called CCK (Camp for Courageous Kids). The camp is for kids with disabilities and they have family retreat weekends for a multitude of conditions throughout the year. They also have week long summer camps for older children. This past weekend the camp was for OI kids. On our first evening there, everyone gathers in the gym to get acquainted and play before the opening remarks and dinner. Ethan was wheeling around in the wheelchair, having a good time playing with the other kids, passing a ball, etc. He then saw another kid's walker and asked to use it. I didn't expect him to be able to go far, but thought why not. So, we borrowed Mer's walker and I put E down.......and this is what he did......

He took off like the energizer bunny and walked all over the place (with the walker). He even fell a few times, probably because his legs are still weak, but when I would try to help him he told me, 'No, I DO IT' and then when he got up on his own, he was so proud of himself and yelled, 'I did it, I did it' with a big smile on his face.

We had fun at camp, but missed some of the events. Ethan is sick with a cold and needed to rest, so he slept through some of the activities but he was still able to enjoy the horses, fishing in the pond, campfire, and swimming in the zero entry pool, as well as playing with the other kids.

Strolling in to see the horses

Horses!!!!

Petting the horse

So excited

Smooches

Fishing with Mommy

Let's catch a big one

Reeling in

Budding Photographer

2011-09-14T19:19:00.000-04:00

While in the hospital recovering from Rodding surgery, Ethan discovered my point and shoot camera. He either calls it 'cheese' or 'camra' and he really enjoys taking pics with it. It took him all of 5 seconds to figure out the controls but I have yet to convince him that he needs to move his finger off the lens. Ha ha!

Anyway, I uploaded his photos today and thought I would share a few. Out of the hundreds of floor, ceiling, and blurred shots, the following were decent:

Uncle Shaun lounging in E's hospital room

Playing Peek-a-boo

Self portrait

Uncle Shaun

Another self portrait. I guess he was yelling at himself. Ha ha

Say cheese Daddy

Hi Nana

Cheese

Aunt Shama

My new horse

Rodding surgery

2011-09-09T10:20:00.003-04:00

Ethan is 11 days post op today and I finally have a few minutes to update.

Ethan is doing well. We have had a few bumps in the road to recovery but he seems to have turned a corner and it won't be long before he is up terrorizing our dogs again.

We flew into Omaha on Sunday and met up with our friends, the Busby's. It was fantastic to see them and catch up. E and R had a fantastic time chasing one another and giggling. :)

E and R

The next day was surgery day so we headed into the hospital at 11am. E's surgery was scheduled for 1pm. Our first road bump came in the form of a scab on Ethan's lower right leg. When Dr. E saw it he immediately said he would not be able to replace the right tibia rod. Initially I was ready to panic because this rod, of the 3 being replaced, was in the worst shape. Ethan had fallen the weekend before and scraped his leg. It never occurred to me that this would be a problem, but Dr. E explained that any skin blemish (such as this scab) harbors bacteria and he did not want to take the chance of operating and then having E get a bone infection. I know of a few other kids that have bone infections and it is NOT something we wanted to risk, so I quickly got over my panic and we moved on to plan B. Since Dr. E was not going to replace this rod, he now had time to rod E's right femur.

Ethan was given Versed before he was wheeled back for surgery and he went without a peep. He was just looking around and holding onto Mickey Mouse. At this point during E's first rodding surgery I burst into tears and was a mess. This time I held it together (yay me) and we went to wait the 5 hrs for surgery to be over.

The time went by so quickly thanks to a visit from the Schoepner's. They live in Omaha and came to sit with us while we waited. I can't express enough thanks for this. Having another Mama there (and her fantastic kids) to chat with was fantastic. The nurse liason was also fantastic. She came out every 30 minutes with an update. E's surgery went very well and Dr. E actually finished early and was done in 4 hours with minimal blood loss. So, he had 2 rods replaced (left femur and tib) and a rod placed in the right femur for the first time.

We were able to see Ethan as we followed him up to his room. He was doing well but wanted Mommy's hand. His pain was controlled with the epidural initially but we soon found he was having issues with spasms. He was supposed to have been given Valium in the OR so there was a little confusion about whether he could have more or not. It turned out he had not gotten it, but once he did he was quite happy. He was moving his legs all over the place, picking them up, rolling over onto his tummy. We had to repeatedly untangle him since he kept getting all of the lines wrapped around him.

Giving Mommy hugs after getting to his room

Awake and watching movies on the IPad

Eating

We had a fantastic Nurse Practitioner from Anesthesia that responded quickly with everything we needed so pain control after this surgery was the best yet! On day 2 Ethan was fitted for a hip spica brace. It was not fun having it put on him as he screamed the entire time. :( He was more stable with it on but the waist part was quite bulky and made it very difficult for me to lift him.

E received some surprises while in the hospital. The Busby's sent him a plush doggy since they knew he would be missing his dogs. The Schoepner's visited and each of the kids made him a card (very cute by the way) and a giant book of stickers. The Parker's sent him a package that included a pop rocketz and flashlight. E really loved the rocket. He was squealing with delight and it was awesome to see him so happy. :)

My new toys and the hip spica brace

Ethan also had a few visitors while in the hospital:

E and Gracie the Therapy Dog

E and Dr. E (our hero)

E and Anna. Anna has OI as well and was here for surgery too

Ethan was discharged on Thursday evening and was happy to see that he had visitors. Uncle Shaun came on Thursday and Nana and Papa Desai came on Friday night to spend the weekend with him. They came bearing gifts as well, but I don't seem to have photos. Ethan is one lucky little guy to have so many people that care about him. :)

Our next road bump came in the form of the hip spica brace. Ethan was uncomfortable in it and I was having a really hard time holding him. After a quick call to Dr. E, we decided to remove the brace and put the post surgical splints back on. He seemed more comfortable in the splints and all was well until I unwrapped his left leg to rewrap the ace bandage that was slipping. I found this:

Blood blister

I was ready to rush him back to the hospital, but Neel and his Mom assured me it was just a blood blister. They ran to a Walgreens down the street and picked up some items to clean and cover it. This is the same place that the metal bracket was on the spica brace, so I have to assume it was either too tight or ill fitting in this area. Needless to say, I am so happy we decided to remove the brace.

The rest of the weekend was uneventful and we had a great visit with Neel's family. Ethan had a lot of fun playing with them and showing off all of his new tricks or new words/sentences since the last time they saw one another.

We have been home since Sunday and other than some sleep issues (to be expected with Ethan) we have been doing well. We did have another issue with the splints. Ethan was complaining about pain on his lower left leg on and off, so when I rewrapped him I saw a bruise and what looked like another blister forming on his foot near the ankle. :( So, I decided to splint him myself with a SAM splint temporarily until we could get something more permanent. Well so far the SAM splint with Coban over it is holding up nicely and yesterday I did the right leg as well since I saw a red spot on his right knee. The old splints had indentations in them and this was creating pressure points. So, E had a good day yesterday and a decent night. I think we have turned a corner! Yippee!

Since coming home, Ethan has also received another gift from our buddies at FAM. FAM is an online group of Mamas that all met online when we were pregnant at the same time. So we have been friends since before our babies were born. They have been with us since we found out something was up with our pregnancy and have always been so supporting and caring. I love these ladies and their kids. They got together and sent Ethan a LeapPad. He is a gadgety guy so it was a perfect gift for him. He is learning how to use it and really enjoying it. We recorded a Thank You:

We go back to Omaha in November for clinic, so Ethan will have surgery again (on his right tib) at that time but the recovery time for just 1 bone will be much faster. He will have his current splints on for 3-4 weeks. We have xrays scheduled for 9/22 and depending on the results, he may get to remove the splints at that time.

Surgery Date

2011-07-26T01:48:00.000-04:00

So while we were on vacation this past week we heard from Dr. E about Ethan's surgery. We had the option to go as soon as Aug 8 (panic panic panic) or any other Monday in Aug, but then the next date was Oct 18th. We chose Aug 29th. So the next month for me is going to be focusing on preparing for the upcoming rodding revision surgery.

We will be in Omaha for a week, or maybe a little longer. Typically he will be in the hospital for 3-4 days but then we will stick around for a few days afterwards just to make sure all is OK before traveling home.

One of the tasks I have to get working on is getting Ethan a wheelchair. He is already refusing to sit in his stroller. It is typically a lengthy process and there is no way to have a chair ordered and here by the time he needs it after surgery. I have been worried about him being upset once he realizes that he will not be able to move around like he is used to after the surgery. At 14 months we were his legs and carried him everywhere or he crawled/scooted around on the floor with his casts on. Now that he is older and in the 'I DO IT' stage, he really needs the independence.

Luckily we have an amazing OI family and a Mom in Georgia is lending E her son's old wheelchair (he just got a new one). She had intended to send it on to another family in California but E will use it temporarily until he is back on his feet and then we will ship it on to the family in Cali. So, road trip to Georgia in a few weeks to pick up the chair and let E have a little time to get used to using it.

In other news, Ethan will also be starting Preschool this Fall. There is a private school 5 minutes away that has a 2 yr old class 2 mornings a week and Ethan will be joining 2 of his friends in the class as well. Ha ha...lots of 2s in this message. For peace of mind Ethan will have an aide watching over him the whole 3 hours to assist him during outdoor play and while changing rooms, etc (ie keep other kids from falling on him or pushing him down, etc). Luckily, Ethan's current babysitter (Chelsey) is available those 2 mornings and will be his aide, so he is already familiar with her. I think it will be good for him to socialize with the other kids and have some time away from Mama. Now I just hope I make good use of those hours and don't sit here worrying about him the whole time.

Of course Ethan's upcoming surgery is most likely going to cause him to start a little late since the class starts right after Labor Day. Once he is feeling up to it I plan to send him so he can do something fun and play with the other kids. Life goes on and we try our best to just roll with whatever the OI sends us.

That is all of the update I have for now. Keep Ethan in your thoughts and prayers on Aug 29th. His surgery is at 1pm (central) so 2pm (Eastern) and will last approx 5 hours.

Northern Cali Vacation

2011-07-26T01:22:00.000-04:00

We just got home from a fantastic vacation in Northern California. We had big plans and luckily they all worked out just fine. I was a little worried about how a 2 yr old would do driving all over the Northern/Central portion of Cali, along with 6 different hotel stops and loads of sight seeing. I'm happy to report that Ethan had a great time as well and all of the time in the car didn't seem to faze him. :)

Pictures of our trip

Ethan made a new friend on the ride home, or maybe I should say girlfriend since they skipped hellos and went straight to holding hands. He called her a pretty girl and she told me 'He's cute'. Ha ha! 2 year olds flirting!

Ladies Man

Working his magic

He's cute, I think I'll take him

A few videos of E's antics while on vacation. Enjoy!

1 Year Post Op

2011-06-30T21:02:00.000-04:00

I took Ethan for 1 year post op xrays today. The good news is that he is definitely growing as there was quite a bit of growth in his tibs and some in his femur as well. The bad news is we are most definitely looking at having to revise the rods in his tibias this year and possibly the FD (expanding rod) in his left femur. I was really hoping that we would be able to make it through the rest of the year without surgery but that doesn't look likely.

We e-mailed the xrays to Dr. E this evening and we are awaiting his response on what should be done and when.

Left femur - The FD rod has come loose from the distal end and is not expanding. For now it is at least supporting the bone, but you can see there is some bowing already.

Right Tib - He has grown quite a bit here and he has some bowing but the bigger issue is that the end of the rod is coming close to the osteotomy and it has to be replaced soon.

Left Tib - Same issue with bowing and the osteotomy site is not healing well in this tib.

Master E Update

2011-06-28T10:54:00.000-04:00

Sorry for the long delay in updating E's blog. He is a very active Toddler and we spend most of our day outside now in the warm weather and even while inside it seems I'm always playing with him or chasing him. :)

Health Update - Ethan is doing great. We have an appt this week for xrays to take a look at his rods since he is now a little over 1 year post op. I'm curious to see how they are doing as well. Ethan has started aqua therapy and is doing fantastic. The pool has the ability to raise the floor so E can actually walk in the water. He has SO MUCH FUN doing this and I can already see that he is getting stronger and gaining muscle. The Therapist and I play games with him where he has to reach over his head, he squats in the water to pick up rings, he sits on a boogie board (while I support him) and he leans from side to side scooping up toys with a net, etc. We also purchased a hot tub for E and he gets a home version of water therapy several times a week playing in there.

I am really enjoying the Toddler stage. Ethan is very loving and he hugs and kisses me all day, although he still uses his hugs and kisses when he knows he is in trouble too. He is a loud, rambunctious little boy who loves to chase the dogs, blow bubbles, play with his cars/trucks/trains, and is fascinated by bugs, sharks, and worms. His imagination is running wild lately as we hide from sharks that are outside the windows, and he picks up the phone and has conversations with Nemo and Dori.

Recent Photos and Videos:

Support

2011-06-28T10:13:00.000-04:00

I don't know why I haven't thought of posting this here before, but I have a new column to the right for Links to Support. I have mentioned the Yahoo OI Parents group many times in my posts. This group was started by a Mom approximately 11-12 years ago. We found this group while I was pregnant with Ethan and the parents here have forever changed and improved Ethan's life by sharing with us their success stories and failures along their OI journey. I cannot express how valuable this group has been to us.

If you are a parent to an OI child and you find this post, please click the link and join Yahoo OI Parents if you are in need of support, advice, or you just want to know that you are not alone.

If you are on Facebook, Neel and I also started a Facebook Group for parents of OI children. It is quite active and also a good resource to socialize with other OI Parents, ask questions, and learn about what other parents are doing for their kids. Feel free to join us!

Then and Now

2011-05-19T18:41:00.000-04:00

Another OI Mom is putting together a video using a pic of our kids as a baby and then now to show how far they have come. I submitted pics of Ethan and it prompted me to put together Ethan's photos and WOW. He really has come so far.

I will never forget those bowed little broken legs that he kept drawn up to his body for months but now it just seems like a distant memory. My little man is amazing!

Wishbone Day Update and other news

2011-05-18T22:27:00.000-04:00

Wishbone Day was quite a success. I can't wait to see the video of everyone celebrating around the world. We took photos at Neel's office and were joined by some of the Corporate office staff. Many of the St. E hospital employees and other offices wore yellow as well. It was an amazing showing of support for Ethan and others with OI.

I would also like to give a shout out to Trace Fork Church. Over 100+ people wore yellow in the form of clothing or a ribbon in support of Wishbone Day as well. Ethan is a lucky boy to have so many people care for him. :)

We had our first scare in quite some time on Wishbone Day. Ethan was walking and tripped on a blanket. He leg twisted under him and he fell on it. After calming him down he tried to walk and when he tried to bear weight on his leg he would cry and fall down. After calling the Ortho and not getting a response we decided to take him to the ER for an xray. We were taken back almost immediately and the Ortho's office called my cell phone. I was talking to the Ortho nurse when I heard Ethan whimper. I turn around just in time to see that the triage nurse had placed an auto BP cuff on his leg. The Mama Lion in me immediately reacted and I ripped it off his leg while explaining that we do not use BP cuffs unless absolutely necessary. I think I scared the nurse since his eyes got wide but he challenged me anyway by asking if the cuff had broken Ethan before. It shouldn't matter! BP cuffs CAN cause a fracture in a child with fragile bones. End of story!

Anyway, Ethan screamed during xray when I pulled his leg down gently so I was quite sure he at least had a micro fracture. After returning to the room E decided to take a few steps. Soon after the Drs came in and gave us the results. They did not see anything on xray so we helped E stand to see if he could walk. He took off across the room. I was relieved and confused at the same time. He has been fine ever since so whatever happened is resolved now. Shew!

Ethan's personality and language is really blossoming. He is also getting too smart for us. When he gets into trouble for doing something he shouldn't, this is how he responds now. Who could resist this?

Ethan has some new shoes, Keeping Pace Orthotic Shoes. They are specifically designed to be worn with AFOs or other orthotics. They also have 3 insoles that can be removed/adjusted for a leg length difference as well as stabilization to help with balance. Ethan is wearing them in this video with pattibobs (to help with pronation and flat feet) but I think I need to adjust them a little more for the leg length difference. Either way he is doing fantastic and walks everywhere now.

Wishbone Day - Friday, May 6

2011-05-05T08:25:00.002-04:00

As you know, Ethan has Osteogenesis Imperfecta. Tomorrow, May 6, is Wishbone Day. In celebration of Ethan and everyone that has OI, please wear yellow and spread the word. If you feel so inclined, take a photo and send it to me or tag me on Facebook, or you can e-mail it directly at info@wishboneday.com. Please include your location. The organizers of Wishbone Day make a video using photos from around the world of all those that celebrate Wishbone Day.

I would also like to take a moment to recognize my husband's Wishbone Day efforts. Neel is a Family Physician for those that may not know and he has his entire hospital system celebrating Wishbone Day this year. St. Elizabeth Physicians and St. Elizabeth Healthcare is comprised of multiple hospitals as well as over 200 multi specialty physician offices in Northern Kentucky. There was an article in the company newsletter that went out this past week and every hospital and office has a Wishbone Day poster asking their employees to wear yellow. Neel's office has Wishbone Day shirts which will be worn tomorrow and the CEO as well as other key corporate employees are making an appearance during lunch to take a photo with Neel, Ethan, and the staff. Ethan and I are extremely proud of all of Neel's efforts. He is an amazing father and Ethan is one very lucky kid to have a Dad that is so involved and cares so much.

Why is Wishbone Day important?

Because AWARENESS makes a difference!

Osteogenesis Imperfecta is a rare bone disorder characterized by bones that fracture easily.

A person born with OI is affected by it for their entire lifetime.

Emphasis is placed on strengthening bones by medicines called bisphosphonates and exercise to strengthen muscles because strong muscles protect weak bones. Orthopedic rodding surgeries allow bones to be straightened which makes them stronger and harder to break.

There are many individuals who have this condition who lead productive successful lives.

OI is a spectrum disorder that leads to people with very different abilites and features ranging from severe to very mild presentations.

Every person with OI is a unique individual who is first and foremost a person who wants to participate to their fullest extent. They are each Snowflakes:each one is different.

Currently there is no cure for OI but researchers are working towards that end.

Spreading Awareness is key to expanding the opportunities for more research and better treatments as well as a cure.

Thanks for participating in the 2nd annual international Wishbone Day/OI Awareness Day by wearing YELLOW on May 6th and supporting Ethan!

Awareness makes a difference!
www.wishboneday.com

2 yr check

2011-04-19T19:48:00.000-04:00

Ethan had his 2 yr checkup with the Pediatrician today. I am happy to report that he has grown and gained weight. Woo Hoo!

22.5 lbs
31.5 in

The Pedi said his height actually puts him back on the charts. I didn't ask where but I'm sure it is probably 5th percentile. It doesn't really matter where he is on the chart. I'm just happy he keeps growing.

He is doing quite well with speech so no worries there or any other developmental areas. We did get a referral to see an Ophthalmologist. I have never raised a concern with Ethan's eyes but because of his collagen mutation our Pedi thought it would be a good idea to have someone following him.

We also saw the ENT this afternoon for his followup appt after having tubes placed in his ears. All is well there also. Dr. Choo was happy to see Ethan walking and enjoyed talking with him.

The incision where his port was placed is healing nicely. He is due on Monday for the first flush. This will be the first time it is accessed while Ethan is awake. I'm hopeful that he doesn't get too upset about it.

Unfortunately we are still dealing with separation anxiety since the port surgery. Since that first night home Ethan has been waking frequently and wants to be held again at night. It is hard to say NO after everything he has gone through recently so I gave in and let him sleep with us. Now that we are a few weeks out it is time to be firm and make him stay in his bed all night. This is going to mean several sleepless nights for me (again) and an upset little fella. I just keep telling myself that he will sleep....SOMEDAY!

Disney

2011-04-12T19:42:00.000-04:00

For Ethan's 2nd Birthday we decided to go big and take him to Disney World for a week. Ethan is having a fantastic time. He is even eating and sleeping well.

Here is a look at our time here so far:

Disney 2011 Photos

A Review of the Past Year

2011-04-06T10:33:00.000-04:00

Happy Birthday, Ethan!!!!

Port

2011-03-26T16:29:00.002-04:00

After a few traumatic days trying to access Ethan's veins for an IV, we are currently sitting in the hospital after another surgery.

For almost 2 years E has had IVs placed in his hands every 8 weeks and for the most part it was fairly simple and on the first stick. Fast forward to his last treatment and it took 4 sticks and 2 of the veins blew. We were hopeful this was a fluke but after 4 blown veins and a lot of crying (from all of us) he was not able to receive his treatment for the first time on Wed. A new nurse tried the following day with the same result after the first stick. The only place left that had not been poked was his feet so we said No and instead worked with his Pediatrician to get an urgent referral for a port.

So less than 24 hrs later, E had port surgery and then received his PAM.

I did not get the chance to post this while in the hospital so I am finishing now. We are home now after 12 long hours at the hospital. E did so well. He is such a trooper and we are so proud of him. He handled it so much better than I did. He was able to get his meds and we were discharged at 1am.

- Posted using BlogPress from my iPhone

Walking in the grass

2011-03-19T16:28:00.000-04:00

We had gorgeous 70 degree weather here on Thursday so we took advantage and spent time outside. Ethan decided to test his new walking skills and take on walking in the grass. He did fantastic and had so much fun exploring on his own and chasing the dogs.

We also had another first last night. Neel and I took Ethan out to dinner and for the first time he refused to sit and wanted DOWN to walk. This is a frustrating moment for many parents but we just smiled and took turns walking close behind him to keep him safe. He walked the entire restaurant several times and smiled, waved, or said Hi to just about every patron. He received many smiles and 'he's so cute' comments in return. I beamed and said Thank You. We love typical toddler moments, especially moments such as this....simply because Ethan CAN.

I leave off with a video of his sillyness:

Tubes

2011-03-10T19:22:00.000-05:00

Ethan's ear tube surgery went well this morning. In fact I think I'm quite shocked at just how different he is.

I absolutely LOVE Ethan's ENT. He is the kind of guy that is very gentle with his patients and he is always smiling. He listened and agreed with our concerns about not using an automated blood pressure cuff. He was on top of it too. While we were waiting to go through all of the checking in he stopped by Ethan's room to check on him and made sure to remind us to tell everyone about not using the BP cuff. I don't think I have ever had a Dr. remind me. We didn't need to be reminded, but it is quite refreshing anyway.

So we had to be at the hospital at 6:45 and we were called back within 10-15 minutes. The next hour was a myriad of people asking questions and each of us were affixed with a bracelet. We went with Ethan to an intake room and I held him while an Anesthesiology fellow placed the mask over his face. He didn't like and cried but he didn't really struggle. It was less than 30 seconds before he was out. I placed him on the bed with the help of the Fellow and the Nurse Anesthetist. I had one moment of panic when the Nurse Anesthetist grabbed E's legs. I opened my mouth to protest but she immediately said she was lightly holding them to help me get him to the table. A little warning would have been nice and I would have said NO but in the end all was well.

He went into the OR at 8:30 and by 8:40 we were in a room talking to Dr. Choo. Everything went as planned and he had vacuumed fluid out of both ears, with the right having more than the left. I guess they like to alternate since the left had more last week. Within 5 more minutes we were called back to the PACU. It took E a little while to wake up completely but he handled it very well. I held him and rocked him for 15-20 minutes while he drank some apple juice then we were able to dress him and be on our way.

The part that I wasn't prepared for was how quickly we would see a change. He started talking the moment we left the hospital and hasn't stopped yet. I can already hear a difference in his pronunciation. His words are much easier to understand and he has busted out several new words today. I also noticed he is much more responsive. I had not realized how often I was repeating myself until today when I started getting immediate responses. The first time he heard Scrubs bark scared him. Everything must have been so muffled before that it startled him to really hear it.

The best part::::::: The moment he got home he stood up and took off walking. Both Neel and I were shocked at how much of an improvement we see in his walking. He is much faster, much more balanced, and is able to go so much farther than before. Of course we took a few videos.

He ate well today as well. If he sleeps well tonight I may cry. I'm holding my breath to see how it goes tonight. I doubt the fluid was the root of all evil (ie causing him to wake several times a night) but I can hope. To be continued...............

23 Months

2011-03-09T19:56:00.000-05:00

Wow, time seems to be flying lately. I feel like I just posted that Ethan was 22 months and now he is already 23 months.

We have been quite busy lately. Tomorrow morning Ethan is having tubes placed in his ears. We saw the Pediatric ENT last week and Ethan had fluid in both ears. He is at an increased risk of hearing loss due to OI so we agreed to place tubes to keep the fluid drained. I'm looking forward to the benefits but of course, any surgery makes me nervous.

I love Ethan's curiosity. His language skills have exploded in the last month and he jabbers all day long. Today he discovered a freckle on the back of his leg. He asked 'wha is that?' and I told him it is a freckle. He got excited and said 'more feckle, more feckle' and started searching his body for more. I have plenty so I showed him the freckles on my arms. He smiled and followed me around for an hour 'counting' the freckles on my arms. I have a feeling in another year he is going to be the kid that responds to everything with 'WHY, WHY, WHY'? I hope I find it just as cute then. :)

He is continuing to advance with walking and this past weekend I took a video of him chasing a balloon around.

23 Month Stats
Wt: 20 lb 8oz
Ht: 30 in

22 Months

2011-02-17T14:53:00.000-05:00

Ethan turned 22 months old on Feb 6. We are less than 2 months away from his 2nd Birthday. :)

Thankfully Ethan is progressing again with independent walking. A few weeks before he was due for his last Pam treatment he started slowing down, not wanting to walk as often. I let it go because I thought he may be achy. His treatment came and went and he continued to decline but he also had an ear infection in between. Once his ears were all clear and he was still having issues with balance and not wanting to walk, we took him to see his Pediatrician. He saw nothing going on with his ears but since nobody could come up with a better answer as to what was going on he agreed to refer us to an ENT if he was still having problems in a week. We now have an appt on March 1 to see an ENT. It has been over 5 weeks now since Ethan started showing issues with not wanting to walk and as of today he took off again. I am super excited about this but I am keeping the appt with the ENT. I still feel like something is going on with his ears.

22 Month Stats:
20lb 1oz
30 in

Recovery, new Dentist, and PAM

2011-01-25T22:44:00.000-05:00

What a week. Ethan and Neel came home sick from Gatlinburg. Neel had a 24 hr bug, but little E was sick for much longer. He ended up also have a double ear infection and had a rough week. I caught the 24 hr bug at the end of last week and thankfully my Mom was able to come and help since I was barely able to move off the couch. Ugh! Unfortunately, we sent my Mom home with the same bug. Oops! I'm happy to say we are free of the sickies now.

Ethan had an appt on Monday with a new Pediatric Dentist for a 2nd opinion. I like the new Dentist and we are going back to see him in 3 months. My only hesitation is that he would not agree to place crowns on Ethan's bottom front teeth, when necessary. I tried to nail him down on this issue but all he would say is that he would not rule it out, but he can't say exactly what he will do when the time comes. He did agree that just pulling the teeth is not the best option. We all agree that Ethan's teeth are not in dire need of intervention just yet, but we are keeping a very close eye on them. I can only hope that when the time comes he does not refuse. The good news is that all of his other teeth (particularly his molars) look great so far, with no wearing.

Ethan received a PAM infusion today. This was our 3rd home infusion, which I am so thankful for. We have had the same nurse all 3 times and she can normally get the IV in with 1 stick. Today, we were not so lucky. :( The first stick went well and he was even hooked up to the meds but he was still crying and fussing, which is not like him. So, she checked the IV and it had infiltrated. Everything was removed and we had to start over. She got a vein the 2nd time as well but Ethan jerked his arm and ended up pulling it out while she threading it and then she tried the same vein for the 3rd stick and it was blown. It was close to E's nap time at this point and he was so exhausted from the whole ordeal that he fell asleep in my arms. He napped peacefully for a while while our nurse contacted her office.

The Hospital has a 3 stick policy and she was not permitted to try again without approval. After talking to at least 3 people at the Hospital, she had to call our Pediatrician (he writes the orders for the infusion) to get an order from him to say it was OK. The politics of the situation is kind of ridiculous really. My personal feeling is that this decision lies with the parents and we gave the go ahead to try one more time, without waiting for a new nurse, so I got a little annoyed with the whole thing. Both Neel and I held his arm for stick #4 so we were sure to keep him from pulling it out. Luckily everything went well and he was finally up and running.

The rest of the infusion was pretty much uneventful, just how I like it. E napped for almost 3 hours and then we read books, watched Mickey Mouse Clubhouse, and did laps around the kitchen island in the wagon for the last hour. Since he did so well, and really because I always feel so guilty that he has to get poked with a needle, we went to Target after and he got a new movie (Horton Hears A Who) and a little truck that sings. He danced in the car the whole way home.

A few new videos of Mr. E:

This one cracks me up. This is what we now do when the telemarketers keep calling. They won't take NO from us, so we let E tell them NO, NO, NO!

E responding to Telemarketer

OI Gathering in Gatlinburg

2011-01-18T19:06:00.000-05:00

We attended a second OI Gathering in Gatlinburg, TN this past weekend. Our first gathering was when Ethan was only 3 months old. It was great seeing some of the same families as well as some new.

Ethan had a great time hanging out with his OI buddies and he went sledding for the first time. It took him a little time to warm to the idea of sledding but he enjoyed it. Many of the families enjoyed the outdoor heated pool on the deck but with snow on the ground, we decided to skip that activity.

Photos from this weekend

While at the Aquarium, Ethan tried out Molly Sullivan's wheelchair. This was another first for him. He did well in it. I like how small it is, so when the time comes to order a chair for Ethan I think we will be looking at the Ti Lite.

Unfortunately we brought home a stomach bug from this gathering. Ethan vomited twice on the way home, as well as once before we left, and Neel also vomited in the car. I couldn't wait to get home. Both are feeling better but neither of them are 100% quite yet.

Desperately Seeking a Pediatric Dentist

2011-01-11T11:51:00.002-05:00

As part of Ethan's OI, he also has Dentinogenesis Imperfecta. Basically, just like his bones, his teeth are also brittle and can wear down or break off easily.
We have been seeing a Pediatric Dentist from Cincinnati Children's Hospital since Ethan got his first tooth. Until now we have been in a watch and see mode, other than the fluoride treatments and taking extra care in brushing his teeth.
Over the past several months I have noticed that Ethan's bottom front teeth (of which he only has 3 so far) have started wearing down. They just keep getting shorter and shorter and they tend to look a little more translucent and grayish in color than his other teeth. So about a month ago I made an appt with his dentist to talk about placing crowns on his bottom teeth. Although I do not feel like he is in desperate need of crowns yet, I would like to be proactive. I certainly do not want to wait until the teeth are causing him pain (if they aren't already) and affect his ability to eat. He eats so little as it is, this could be quite worrisome.
At that appt his Dentist told me they do not usually cap bottom front teeth but he would look into it and see if they had crowns small enough and he would consult with the Dentist that is listed on the OI Foundation's website as an 'expert'. We met this Dentist at the Conference in July and had heard good things about him. The Christmas Holiday delayed the two Dentists, as they played phone tag for a few weeks. I finally received a call a week ago to bring Ethan back in to talk to his Dentist.
Ethan's Dentist informed me that he is not comfortable placing crowns on his bottom front teeth, now or anytime in the future. He cited an issue with how close and small Ethan's teeth are and said it would be too difficult, as well as run the risk of getting into the nerve resulting in the need for root canals. When I asked about the alternative he told me he would pull them when it became necessary. So, his only option is to remove Ethan's 4 (once the 4th comes in) bottom front teeth and just leave him without those teeth for several years. Umm...NO! He was very polite and suggested we get a 2nd opinion. He is willing to place crowns on the front top teeth and molars when it becomes necessary. The 'expert' from the OI Foundation was little help. He is not a Pediatric Dentist and basically just said, 'Yeah, that is not typically done.' Thanks for your expert opinion!
There are several children with Ethan's condition that have had crowns placed on their bottom front teeth, so I know it is possible. Granted, I have no idea if the spacing of their teeth made this easier, but I refuse to allow this Dentist to just wait until they wear away to nothing and pull them.
I have contacted other Parents in our fantastic support group and found a Dentist in particular that has performed this procedure on at least 3 other OI kids in the last year or so. Unfortunately she is in Atlanta, GA. Of course going out of state could pose problems with our insurance and whether or not they would pay, but I will deal with that if/when the time comes. We will go to Atlanta if we have to, but for now I am getting a 2nd opinion locally. There is one dentist that has another OI and DI patient here and although this child has not needed intervention yet, he is apparently open to the idea at least. We have an appt on Jan 24th with the local Dentist and I am hopeful he will be a little more responsive to Ethan's needs. Another option is the Dentist affiliated with Montreal Shriners (where Ethan had rodding surgery). Again, I do not want to go to Canada for his teeth but if that is our only option, we will.
Who knew primary teeth could be so stressful? I know some think, it is just primary teeth, so it is not a big deal. It is a big deal when the teeth grind down to the point of causing pain and interfere with the ability to eat. Ethan's teeth erupt at such a slow pace as it is, so I imagine his permanent teeth will take forever to erupt as well. I just can't imagine him losing 4 of his teeth by the time he is 2 when I believe he should have them until he is 6 or 7 years old.

21 Months

2011-01-08T11:12:00.003-05:00

Three months away from a 2nd birthday! This stage of Toddlerhood is definitely a fun one. Ethan keeps it interesting. He is learning new words every day and his personality is rapidly developing as well.

He starting saying ‘Luh Ooh’ to Mommy and Daddy and nothing makes me melt more. He also loves to say ‘Got Choo’ as chase is his favorite game.

His little legs are getting stronger every day. He can now stand up and walk across the room on his own. A few more months and I think he will be walking on his own all of the time. Time will tell.

21 Month Stats:

20lbs, 29.75 in

Walking with Daddy

Dancing with Daddy

Christmas 2010

2011-01-08T11:12:00.001-05:00

Ethan had a fantastic time opening gifts this year. He was meticulous about ripping every shred of paper off, and he did so in tiny pieces. It was great to watch.

Here he is playing with a few of his gifts and a family pic.

Riding my Moo Moo. He rocks so fast on this….heart attack!

Rocking on my Moo Moo

Mickey Mouse Chair.

Ooohhhh….I love dancing and singing along to Rudolph

Playing with my toys

Our Family

Standing on his own

2010-12-16T15:49:00.001-05:00

Walking

2010-12-09T10:25:00.000-05:00

He is taking up to 9 steps as of this morning. We are so proud of him.

20 Months

2010-12-06T23:09:00.000-05:00

Ethan is 20 months old today. Only 4 months away from his 2nd birthday!!

Things have calmed down in our household lately. With the ever increasing cold weather we have all been under the weather at one time or another. Unfortunately it is currently Ethan's turn. Being sick doesn't slow him down though.

He is thoroughly enjoying our Christmas tree this year. We have an artificial tree that rotates and Ethan loves to "chase" ornaments around the tree. I really need to capture him on video because it is quite funny. He doesn't seem to understand that the ornament he is after will come back around (or he doesn't have the patience to wait for it, I'm not sure which.) so around he goes chasing after it.

20 Month Stats:
19 lbs
29.5in

I will leave you with a few photos I took recently.

A Single Step

2010-11-23T18:06:00.000-05:00

Who knew a single step could make me so excited...yet IT DOES!

Ethan took his first independent step today!!!! I can't even express how proud we are. He has been working hard and all of his and our effort is paying off. He gets so excited and claps for himself when he stands and we (Neel, Tom the PT, and Me) all cheered for him when he took that step this morning.

Of course I will capture him on video soon so be on the lookout!

On a side note - We found ourselves at St Elizabeth today and decided to drop by to say Hi to Jodi. I have mentioned her before in the earlier posts of this blog. Jodi was the Genetics Counselor that happened to be available the day we had our level 2 Ultrasound and were given a lethal diagnosis. Jodi was the one with a positive attitude and from the very beginning told us she did not believe Ethan's condition was lethal, completely opposite of what we were being told from the Perinatologist. She truly went above and beyond, calling to check on us, digging for all the information she could find, and working with people all over the country to find labs or experts that could help with a proper diagnoses. Jodi will always be special to us because she gave us Hope and in the end she was SO RIGHT! We had a fantastic visit with her and she was so happy to see Ethan and how well he is doing, which in many ways is due to her perseverance.

We also got to see Dr. Lambers. She caught us as we were getting on the elevator to leave. Dr. Lambers was the 2nd Perinatologist we saw and she backed up what Jodi was telling us that Ethan most likely had OI, but it was not lethal. Dr. Lambers also gave us Hope and we credit her as well. She facilitated additional testing to provide answers when we were in limbo waiting on the DNA results. Receiving Ethan's diagnosis before he was born permitted us to prepare for his arrival. Being armed with information also allowed me to somewhat relax and enjoy the rest of my pregnancy. She as well was so happy to see Ethan and was quite impressed with how well he is doing.

So many times parents come away from prenatal testing and ultrasounds (when dealing with OI) with such negative and horrible experiences. We did as well in the beginning, but I can say that we also had a team that were fantastic and we will be eternally grateful to them.

Wild Man Running

2010-11-18T20:54:00.002-05:00

Ethan’s newest thing is running…in his walker of course. He chases the dogs (or sometimes Daddy) around the kitchen island and giggles the entire way.
Another exciting thing is that he has been letting go and standing on his own more and more. He will also walk while holding onto something (usually me) with one hand.

He is a little daredevil! I changed one of the bulbs in the kitchen this evening and left the step ladder open while I tossed the old bulb. Ethan was standing at the ladder when I walked away but the next step was so high up it never occurred to me that he would be able to reach it. I was wrong! I turned around and this is what I saw:

He then proceeded to the next step and tried his best to go all the way to the top. I had to pry his fingers loose and drag him away kicking and screaming. Forget gray hair, I think I’m going straight to white!

Standing on his own

Running

All in one

2010-11-08T22:18:00.001-05:00

This is going to be a long post. I have been slacking on updating this blog and we have had MANY things going on lately. So here goes......

Ethan is now 19 months old! He chatters up a storm, gives the best hugs ever, blows kisses, fist bumps, high fives, waves and says Hi or bye bye to anyone that will look at him. He is such a sweetie! He is still 'learning' to walk, getting stronger every day. He zooms around in his walker for longer distances now and cruises everything. He has also started letting go and standing up on his own. His balance is still off so he falls after a few seconds but he throws his hands up in the air and yells every time....he gets super excited!

19 Month Stats:
Wt: 18lbs 5oz
Ht: 29.5 in

OI Clinic

We just returned from the yearly OI Clinic. This year we decided to take Ethan to Omaha Children's Hospital in Nebraska. This Center is a Center of Excellence when it comes to OI, just like the Shriner's in Montreal. We received all good news. Ethan's legs are healing well and his spine xrays showed a nice straight spine with no fractures. His bone density scan came back with a z-score of -1.2. This is basically unchanged from his last scan, which is still good.

The PT/OT/Dietician evals went well also. The OT suggested that we have him evaluated for chewing issues because he doesn't like to eat meat. I don't really think it is an issue. He can chew the meat, he just chooses not to swallow it and spits it out. He just doesn't like it. While in Omaha we met several other OI families. It is always nice to hang out with other parents that have been or are dealing with the same issues. They truly are part of our family too. Ethan loves to play with the other kids too so that is always a plus.

A few photos taken while in Omaha

NY and Halloween

Before Omaha we celebrated a wedding and Halloween in NY with Neel's family. We had a really nice visit and Ethan had a great time with Nana and Papa as well as Ba. Neel's Ba (Grandmother) chased Ethan around the kitchen island while he giggled and laughed and crawled around. It was so cute! He showed off his skills with the walker for Nana and Papa and just had a great week spending time with them.

I'm happy to say Ethan behaved very well during the wedding ceremony and he had a blast at the reception, dancing the night away. Congratulations again to Giorgos and Tara Tsepapas (I hope I spelled that right). It was a beautiful ceremony and both are such lovely people.

Pics taken on the day of the Wedding

For Halloween Ethan dressed as the E monster. We took him trick-or-treating (for the first time ever) in the neighborhood where Neel grew up. The first house we went to was the house Neel used to live in. The current owners were nice enough to invite us in for a tour after finding out Neel used to live there. It was very nice to get the take the tour with Neel and Ethan and see the house he was raised in.

Ethan enjoyed trick-or-treating but was not a big fan of the hat on his costume. So he went without it and it was REALLY COLD so we didn't stay out long.

E Monster

OI Camp

We recently had the chance to participate in a weekend camp for OI kids in Southern KY. The Center for Courageous Kids is an amazing place that provides the opportunity for so many kids with multiple disabilities to participate with their peers in so many activities and to just have fun. We were there for a Wild West weekend with 20 or so other OI kids. We had such a good time hanging out with our OI family and Ethan had a blast checking out the horses, bowling, swimming in the indoor pool, riding a boat in the lake, etc.

Wild West Weekend

I think this pretty much catches me up for now! I leave you with a few videos of my little dude!

It’s my 18 Month Birthday

2010-10-06T21:09:00.001-04:00

Today Ethan is 18 Months old. It has been quite a journey over the last 18 months and I have loved every moment of being Ethan’s Mom.

He brought me a flower earlier that Daddy helped him pick and then he gave me a kiss and a hug. I turn into mush when I get hugs and kisses from this sweet little guy. I am one lucky woman!

So at 18 months Ethan is still going strong. He is cruising everything, walking with his walker, and will walk occasionally holding our hands.

He is really into animals right now, especially cows, ducks, and roosters. He loves to moo, quack, and crow. He also loves to color, read books, play with his cars and trucks, and above all else he LOVES being outside.

He has also been sleeping in his own room and most of the time through the night for about 3 months now. Yippee!

Current Stats:

Weight: 17.5 lbs, Height: 29.5 in

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First Home Infusion

2010-10-06T20:29:00.001-04:00

We completed Ethan’s 1st Home infusion of Pamidronate this week. I admit I was quite nervous about the Home Health Nurse trying to get an IV but she got the IV on the first stick. Can’t ask for anything better!

We now have a box full of supplies and an IV pole stored in the laundry room. I didn’t realize we would be responsible for keeping these items in between infusions but I suppose it make sense. Now keeping Ethan from trying to ride the IV pole across the kitchen floor over the next few months is going to be fun.

Since receiving his infusion yesterday Ethan has gotten even wilder and he is just all over the place. I can’t help but smile every time he gets wild. He is having a good time and I have a good stylist that can cover all of the gray. ;)

Pediatric Walker

2010-09-03T16:41:00.001-04:00

Ethan’s walker came today. Here is a video of his very first attempt. He will be cruising in no time!!!!

and here he is about 30 minutes later. He has already figured it out and he is now mobile! I need to put his AFOs on but we were too excited to stop.

Walking to Daddy

Walking

2010-09-01T15:18:00.001-04:00

Released

2010-08-30T21:49:00.001-04:00

Ethan had another set of followup xrays last week at approximately 2.5 months post op. We e-mailed them to Dr. F and heard back from him over the weekend. Ethan is healing nicely so he has basically been released from Dr. F’s care. He did ask that we send xrays at 6 months post op but he has no restrictions at this point. That was great news. Really I don’t know how we could have ‘restricted’ him from doing what he wanted anyway.

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Ethan is still working hard every day. He is doing quite well with standing and is slowly starting to cruise. He seems to only want to cruise to the left. Our PT thinks it is because of the leg length difference. So, we are doing a homemade version of Orthotics by cementing a rubber sole to the bottom of one of his shoes to even him out a little more. I still haven’t gotten him on video cruising. He sees the camera and immediately sits down and comes over to me. He loves to see the ‘baby’ (ie himself). He smiles and keeps saying ‘Baby baby baby’. I think someone has a crush on himself.

We should have his walker in the next 2 weeks. We finally got insurance approval last week and the rep said it would take about 2 weeks to receive the walker. I’m excited to see what he will do with it.

We are still doing well on the sleep front. Ethan has been solely sleeping in his crib for about 5 weeks now. No more middle of the night snuggling in bed with Mommy. His sleep is still somewhat inconsistent but we are getting there. Some nights he sleeps through the night (Yahoo!) but other nights he will wake 2-3 times. Many times I have to go in and settle him down before he will go back to sleep. Some of this may have to do with the fact that he has another tooth. This one snuck in on me. I just found it last night. One of the molars came in at the top.
This makes 5 teeth at the top and still only 2 at the bottom. His bottom 2 teeth are starting to look worn down which makes me quite nervous. They aren’t bad enough to need immediate assistance but I am keeping a close eye on them just in case we can’t quite wait until his next appt in 5+ months.

I will leave you with a few photos and videos we have taken recently:

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New shoes and a shiner

2010-08-15T21:18:00.001-04:00

Ethan has his first shiner. It looks ugly but I am not even sure exactly how it happened. Ethan was snuggling in bed with me this morning after waking…..or more like he was watching cartoons and bouncing all over the bed while I was lying there groaning about him waking up at 6am every day. Ha ha!! So he was chasing Susie and smacked her. Bad Toddler! So I picked him up and he was sitting on me. He leans over towards Susie and fell onto her and the bed. I tried to catch him and did some weird flippy thing pulling him back to me. He cried for about 10 seconds and started playing again so I thought all was fine until I later noticed his shiner. I know Susie didn’t do it because I was looking right at her but I can’t figure out what his face came into contact with that was hard. I can only guess the tv remote or maybe my cell phone, both of which he threw onto the bed earlier?

We went shopping yesterday for shoes that will fit over Ethan’s AFOs. He is supposed to wear the AFOs when weight bearing and he has been pulling to stand all day long so I had to find something to make the AFOs safer to stand in. The bottoms are smooth and I’m sure slippery in the right circumstances.

We found some extra extra wide shoes at Stride Rite in a size larger than what he normally wears. They look huge to me on his feet and he doesn’t like them much. He did stand in them though so I guess they aren’t uncomfortable. That is what matters!

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Completely unrelated but I just had to share – He slept through the night last night. He has done this now a few times since we implemented sleep training with the Sleep Lady Book’s advice. Yay Sleep Lady!!

Baby Walker

2010-08-11T14:37:00.003-04:00

Look who just took his first assisted step!! It's a start!!!

Ethan using baby walker

16 Months and The Sleep Lady

2010-08-11T12:41:00.001-04:00

Ethan is 16 months old now. Time is flying by!!! The Desai household is doing well. In fact we are much better since discovering The Sleep Lady. Several months ago I bought a book ‘Good Night, Sleep Tight: The Sleep Lady’s Gentle Guide to Helping Your Child Go to Sleep, Stay Asleep and Wake Up Happy'. Unfortunately with everything we had going on at the time I didn’t even open the book, put it on the shelf and forgot about it. Recently, someone else mentioned the Sleep Lady and the basic concept of the book. I was interested since Ethan’s sleep habits had regressed horribly since his surgery. He was wanting to be held all night long again while he slept. So, I googled the book and when I saw the cover I thought ‘Hmmm….that looks familiar’. So I checked our bookshelf and sure enough it was the same book.

I immediately read the book, or at least the chapters that applied to Ethan’s age range, and implemented it that night. Since then we have all been getting better sleep. Ethan is sleeping in his crib THE WHOLE NIGHT, no longer wants a bottle at night, and he hasn’t been waking at night nearly as often. Last night he didn’t wake at all. This is rare for Ethan!

We have had setbacks along the way, such as last Saturday. Neel and I met some of my high school friends for dinner so Ethan stayed with my Mom. The next few nights were rough because he no longer wanted to sleep by himself again. Then last night he was being stubborn and refused to lie down so he fell asleep sitting up. LOL! I surrounded him with pillows and just waited for him to topple over. He lasted 30 minutes before he finally fell over and really went to sleep.

Since Ethan’s surgery he has continued to progress. He pulls to stand on just about anything and everything now. We are still waiting for him to move to the next step of cruising. Right now he is building up stamina. In the beginning he couldn’t stand for long before needing to sit but he can stand for longer amounts of time as each day passes and he is climbing onto everything he can as well. It is great watching him progress!

Another new thing for us is that he is eating better. I have to believe it has something to do with better sleep because this started right after we started sleep training. He has even gained a little weight. At 16 months he is just under 17 lbs and 29 inches. It is a huge relief for me to see him eating. He is almost completely switched from formula to milk at this point and I was worried he would lose weight but he is doing well. He is on the last can of formula and I will not be buying more. Yay!!!

We have had a few outings in the last week or so:

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7 Weeks Post Op

2010-07-29T20:01:00.000-04:00

Ethan is now 7 weeks post rodding surgery and he is doing great. He is still very active and getting into everything.

Earlier this week we saw our local Ortho for followup xrays. Everything looked good. The rods are in place and his legs are healing nicely. I mailed the CD off to Montreal and we are waiting to hear from Dr. F. For anyone who is curious, here are the films:

Local Ortho measured his femurs and although not 100% accurate on xray, the left femur is only 1/2 inch shorter than the right. Not bad!

Right and left leg Lateral view

The following is a few examples of how Ethan has been getting into everything and progressing since his surgery. He is pulling up again and tonight he climbed the entire set of stairs to the 2nd floor.

Discovered the doggie door in the basement. So far he has only thrown toys out and loves to put his arm through but hasn't tried to crawl through yet.

He loves to knock things off the table next to the couch. Now he is trying to push the lamp off. Oy!

15 Months Old

2010-07-14T21:14:00.001-04:00

Ethan had his 15 month checkup today. He is 16.5 lbs and 28.5 in....still a peanut. He lost weight after the surgery but is back to the pre-surgery weight so hopefully he will put some additional weight on now. Everything else checked out well.

We also discussed doing home infusions for Pamidronate. We currently travel to Columbus, OH every 8 weeks. As long as we can find a good Home Health Nurse to place the IV I would love to be able to stay home. Ethan's Pediatrician suggested I contact Home Health at Children's Hospital so I shall be doing so in the near future to start that process.

We also have a Pediatric Walker ordered. I'm hoping it arrives by the time Ethan is ready for it. Ethan is starting to pull to stand again. His legs are still weak, just 5 weeks after surgery, but he is getting stronger every day. He doesn't seem to mind wearing his AFOs but he is not able to do as much when he wears them. He can't pull up when he has them on...at least not yet.

That is all the news I have for now so I will leave you with this:

OI Conference 2010

2010-07-12T16:44:00.000-04:00

We have just returned from the 2010 OI Conference in Portland, OR. This was our first Conference and I hope we make it to several more.

Neel and I had a great time catching up with families we have already met as well as meeting so many new families. Even though Ethan is only 15 months old, I felt it was important for him to meet others with OI young and old. I was amazed at how much fun he had. Ethan is around other children on occasion but he doesn't interact much. I don't know if they can sense a comaradrie or what but he immediately took to playing with the other children at the Conference. On our first evening there Lily Scarberry chased him all over the Lobby and he giggled and scooted as fast as he could go. She also crawled up the stairs so he followed. This was new since the surgery so that was great to see. We met several new kiddos, some as far away as the UK.

Of course we met up with our good buddies Carter and Merrick. It was awesome watching them race their walkers through the Lobby. They are both very fast. Carter (3.5 yrs old) sang "You Are My Sunshine" at the Talent Show. He is not a shy child for sure.

Ethan spent some time in the Conference sponsored child care while Neel and attended sessions on Fri and Sat. I was a little nervous since this was the first time he was being cared for by a stranger. He did fantastic of course and had the ladies wrapped around his finger by the last day. When I picked him up on Saturday he waved at them all, said bye bye, and then blew kisses. He is such a flirt!

My favorite sessions were those that were led by parents or those with OI themselves. There was a parents discussion specific to children up to 6 yrs old that was quite helpful and one other titled 'What My Parents Did Right' which included a panel of 3 young OI Adults detailing what their parents did right in raising them and how they and their families dealt with their OI as well as everyday things. It was emotional for many of us and great to be a part of. The other sessions I found helpful dealt with more of the nuts and bolts of OI. Things such as DI, modifications to your home to accomodate your OIer, the Bishphosphonate Update, etc.

Of course the social parts of the Conference were fantastic. The Talent Show was amazing and Ethan danced the night away during the Dance.

I have photos of course and a few videos. The next Conference is in Washington, DC 2012. The Desai's will be there. :)

Photos of the Conference

Ethan Dancing with Daddy

Carter, Sophia, and Merrick Dancing

Message for all our blog followers.

2010-07-03T00:28:00.003-04:00

So I don't post very often, but I just felt I should since I have not in a while. We still can't believe how well E is doing - he has come so far from when Deb and I were first told he had a fatal condition and would not live almost 1 1/2 years ago.

It is amazing how much this little boy has touched so many lives and given joy, happiness, inspiration and just love to not only Debbie and myself , but so many of our friends, family, co-workers, and people we have never even met

To say Deb and I are proud of this little guy is an understatement - he is so determined and such a happy child.

We thank all of you who have been so supportive - friends, family, fellow OI parents, and just general well wishers. We would not be where we are today without your love, support, and strength. I have said this before, but I will say it again because I think it bears worth repeating - I am still amazed and in awe of what a great Mommy Deb is day to day - whether it is doing PT with him, getting him to his doctor appointments, or just rocking him to sleep and singing a sweet lullaby. She has always been there for her baby boy and it shows - Ethan loves you Mommy and so does Daddy.

Oh yes, and little E loves you all too!!!

Guess I was feeling sentimental today since I haven't seen my wife or boy in over a week! But they are coming home so I will get to see them in just a few hours!!

Physical Therapy

2010-06-30T20:40:00.001-04:00

Ethan is 2 days post cast removal and 3 weeks post rodding surgery. He is doing great. I am so proud of him.
We saw Dr. F yesterday. He was happy with the healing on the xrays. We have to send xrays again in 3 weeks so he can see them again. So far all is good.

Ethan has been doing pool therapy once a day where he has begun kicking his legs and doing some weight bearing while in the water. Today he also stood while in his AFOs for the first time while supported by Stephanie. I have video and a few photos. He is progressing faster than Stephanie and Dr. F thought he would which is great news.

Ethan Standing/Weight Bearing

My big boy wearing his AFOs

Weight bearing and doing supported standing

On my tummy doing stretches

New Legs

2010-06-28T16:00:00.000-04:00

Ethan had his casts removed this morning and AFOs fitted. He was not a fan of the cast saw but it was over pretty quickly. His legs look nice and straight. It is going to take some time for him to find comfort with the left leg. Currently he is most comfortable with the leg slightly bent like it was in the cast. He hasn't stretched it out completely so I can't say for sure there is a leg length difference but I do believe there is. Obviously his legs are much closer in length now than they used to be though.

Here are a few photos:

Ethan's New Legs

I will post more over the next few days.

Back to Montreal

2010-06-23T19:34:00.000-04:00

We are headed back to Montreal this weekend and Ethan will be having his casts removed on Monday morning. He will also be fitted for the AFOs that were molded after his surgery. We then see Dr. F at the hospital on Tuesday and he starts PT twice a day the rest of the week. Time has gone by quickly since the surgery. Ethan has gotten used to the casts and moves quite well with them. He can commando crawl and bum scoot almost as well as he did before the surgery.

Colander Head - Playing in Grandma's kitchen and turned a colander into a hat. :)

I also have a few videos we have taken this past week of Ethan:

Helping with Laundry

Blowing Kisses

Playing in the box

Modes of Transportation

2010-06-17T12:52:00.000-04:00

Since Ethan's surgery last week we have had to come up with new ways to keep him occupied. He is very active so this has been a bit of a challenge since he can't get around like he normally does.

He has been taking many walks in the stroller or his trike that he got for his birthday as well as his cushy padded up wagon that has worked quite well.

Then we dropped by Toys R Us and Grandma went crazy. He came home with a new Mickey Mouse Trike that he loves and a motorized Tot Rod car that he really loves. I will admit that it would have been very difficult not to buy him the car since he was laughing uncontrollably while riding it.

I thought I would share some of the joy he is getting out of his new toys:

Riding the Tot Rod

Figuring out how to Drive the Tot Rod

My paddy wagon

Mickey Trike

My Tot Rod

Rodding Surgery

2010-06-15T11:25:00.001-04:00

We are almost 1 week post rodding surgery. Ethan is doing great and we are very happy to be home. :)

We arrived in Montreal on Monday last week and as we were unpacking we saw Ethan climb stairs for the first time. Our room had 2 steps down from the entry/kitchen area into the living area. I had no idea he could even do this.

Ethan climbing stairs

We got to hang out with the Browns at the hotel and it was so nice to see Ethan playing with Carter. Carter is 3 and Ethan just loved following him around. He followed him into the bedroom and the kitchen, and they sat and banged on the glass closet doors together. It was adorable!

The following day he was admitted. It was a mostly uneventful day as far as the surgery goes. We spoke to the Anesthesiologist and the Surgical Resident to go over the plan. Ethan shared a room with his buddy Carter for the day and we even met a few other kids with OI. Amyrah came to the room several times to play with Ethan. In the evening, Ethan and Daddy were having fun throwing socks and Mickey Mouse over the crib rail. Whatever it takes to keep him happy right! :)

Ethan and Neel Playing

Ethan's surgery was the first of the day so we were up early to clean and gown him up. We met with another Anesthesiologist and went over a new plan for the surgery and pain control. Not really sure why they switched but it doesn't matter now. We also met with Dr. F and went over what he was going to do. Handing Ethan over at the OR doors was VERY difficult for me. He did well though. He didn't seem upset at all. Then we waited....and waited....and waited. The surgery took approximately 4 hours.

We were able to see him in the Recovery Room right away and I was able to hold him immediately too. He was very groggy and unfocused. It took an hour or so before he was ready to go to his room. Something I did not expect was all of the wires and tubes. He had 2 IVs (1 in each hand), foley catheter, epidural, pulse ox on his finger, and leads on his chest checking his heart rate and respirations. This made it difficult to move him so I always had to have someone help. Ethan slept most of the day, sometimes in the crib, and sometimes while I held him. He seemed quite comfortable though and smiled and winked at me when he was awake. :)

That night we had a rough 2 hr period. He woke up crying and seemed to be in pain. I couldn't calm him down so I called the nurse. She called the Dr. on call who came down to see him. This Dr. called the Anesthesiologist on call who ordered a dose of Toradol. I think he was having muscle spasms which is common in this situation but they would only give Valium every 12 hrs. The Toradol eventually settled him and he slept until 9am when things pretty much started all over again. Our day nurse could see that Ethan was in pain so we started questioning whether the epidural was working. The Anesthesiologist was called and she ordered a dose of Valium and Toradol on top of the epidural which had Fentanyl and some numbing agent. Ethan was still fussing and uncomfortable. She was supposed to be out of surgery at 2pm. I kept asking where she was and was told the surgery must be running long until 5pm....YES 5PM when I overheard the next shift nurse on the phone. Apparently the Anesthesiologist had gone home for the day without coming to see Ethan. I overheard the nurse say, 'Mom is going to be livid' and YES I WAS. The Anesthesiologist had the nurse cap the epidural and start oral Morphine. We really wanted the epidural out so all of the other wires and tubes could be removed as well but at least his pain was now being controlled. She also came back in to talk to us. I am still not sure what happened but someone apparently told her that Ethan was fine and she didn't need to see him.

The Morphine made Ethan loopy and paranoid. He woke up frequently through the night looking around confused until he saw my face. At one point he even grabbed Mickey Mouse, strangled him and threw him out of the crib. I guess he was not welcome! That night he caught his IV on the crib rail and popped it loose. It was dark but I could feel something wet so I turned on the light and saw blood going everywhere. I thought he had pulled it out of his hand but he had just pulled it loose. It took 2 nurses and me quite some time to clean up the mess. Early the next morning another Anesthesiologist came to remove the epidural. It was pretty quick and painless and soon after the nurse removed the foley catheter, and the leads and the IVs. He was definitely much happier now. We also changed his meds again to Tylenol with Codeine and Ibuprofen.

Since we were flying home on Sunday, his casts had to be bivalved and his hemoglobin levels had to be checked. When they were removing the first IV they took blood to check the Hemoglobin levels. The first tests came back really low but all over the place so they tried again when removing the 2nd IV. This test also came back low at 8.7. It needed to be at 9 for him to fly without needing oxygen. They called the airlines and asked about the oxygen and at first were told they had oxygen on board and they only required it to be available in case he needed it. Then Trudy called to check again since it was an International flight and the story changed. They did not have oxygen on International flights so she was desperately trying to find a place that had portable oxygen. At this point we had an hour to find oxygen, fill out the paperwork, and get it to the hospital on time in order to mee the 48 hr advance notice set by the airline. I thought for sure we were not coming home on Sunday. We decided to do a finger stick to check it again. Luckily it was 10. So after all of that we didn't need oxygen after all.

Finally Saturday rolls around and I had been averaging about 2hrs of sleep a night so I was ready to go. I did get an hour here and there during the day when Neel was there but my brain was mush by this point. Anyway, it is discharge day so Woo Hoo! I was really hoping to get out early in the morning but you know how that goes. We finally leave around 11:30 am and get back to the hotel. Neel takes Ethan for a stroll to the Pharmacy to fill his prescriptions so I can shower and take a nap. Of course we had another speed bump. The Pharmacy kept asking for his Medicare card even though he explained we are not Canadian and we would be paying for the prescriptions. They had to call the hospital also because Ethan's name was not written on the prescription...not sure how that was missed. In the end we got the meds and I got to take a 3 hour nap while Ethan and Neel went to the park and a mall down the street.

Ethan quickly figured out how to get around in the casts. The moment we put him on the floor he rolled over on his belly and figured out how to sit and even crawl forward.

Ethan in his casts

We have been home since Sunday and Ethan is doing quite well. We are still having sleep issues. He can't seem to get comfortable at night but last night was not too bad. I'm hopeful that he is getting used to the casts.

I know this post is super long but I also have to say how lucky we are to have such amazing people in our lives. We have received so much support and prayer from people all over the world. Ethan is one lucky little guy to have so many people care so deeply for him.

In my gown ready to go

After the surgery giving Mommy a smile

Yay! All of my tubes and wires are gone

Taking a stroll in the hospital

Home and Reading the cards I received

Left femur and Tibia after surgery

Right Tibia

NYC

2010-05-27T10:27:00.000-04:00

We visited NYC last weekend and had a great time meeting some of Ethan's fellow due date buddies as well as hanging out with family.

On Saturday we met Ethan's buddies near Central Park. We had a picnic on the Great Lawn. Ethan fell asleep while we were walking into the Park but Leo and Max decided he needed to wake up so they kept grabbing at his feet in the stroller. :) He joined the fun and crawled around, danced to music from our Iphones, and had a great time.

We stayed with Jay and Michele in Manhattan and met up with Neel's parents for dinner on Saturday night. It was their 38th Anniversary. Quite an accomplishment! Ethan was happy to see Grandma and Grandpa and everyone had a nice time.

Here are photos from FB of our trip:

NYC Trip

Ethan is a little wild man these days. He and I are visiting my parents for a few days and he LOVES being outside here. We were hanging out yesterday and I took a few photos and then a video last night when he SHOULD have been sleeping but he was just too wired.

Wild Man

He is not fond of grass so he crab walks through it

Basking in the sun

Playing Ball

Better yet, I found Mom's shoe

We are now less than 2 weeks away from Ethan's surgery. I think Ethan will do fantastic, I'm just not so sure I will. Ha ha.

As soon as E wakes up from his nap we are going to my Aunt Lodena's house to take a dip in the pool. E gets to try out his new baby float. I love this warm weather!!

Wishbone Day and other updates

2010-05-07T22:06:00.000-04:00

Thursday, May 6th was Wishbone Day - an international day of awareness for those living with Osteogenesis Imperfecta. Ethan and I wore the shirts I made and spread the word to those that we came into contact with. Many of our friends and family members also wore yellow in honor of Ethan and others with OI. I was so moved to see the photos and/or statuses on Facebook of so many people who "got their yellow on".

To everyone who supported Ethan on Thursday: Thank you Thank you Thank you! We are truly grateful and YOU ROCK! OI Awareness is a fantastic thing and really it was just amazing to have a day where our snowflakes were honored, just for being who they are. It was a day of celebration and I can't wait until May 6, 2011 to do it all over again.

My Wishbone Day T-shirt

Thursday also happened to be the day Ethan turned 13 Months old. He is still doing well and he put all of the weight he lost back on plus more. He is now 16lbs 1oz and 28 in.

Ethan received the last Pamidronate treatment before his rodding surgery this week as well. He has been a little wild man since his 2nd day of Pam. He has been pulling up to stand on everything he can grab on to and he continuously wants to climb up the back of the couch. When he isn't doing this he is chasing poor Susie all over the house. He LOVES Susie and really wants to hug her but he pulls her fur so we have to keep them separated as much as possible.

Getting PAM. He pole danced again but we didn't take photos this time. He was all over the place, hamming it up for the nurses, and just having a good time.

Someone at our hotel pulled the fire alarm so Ethan got to see a Fire Truck

This was the only way we could get him to eat: on the floor and out of the lid of a styrofoam container

And then he decided Grandma needed a bite

This is what he was doing this morning: He loves vaccums of any type so the swiffer sweeper is right up his ally. He does a pretty good job too.

Lastly, this is an example of what he has been getting into lately.

Hearing Test and other stuff

2010-04-30T17:58:00.000-04:00

I haven't updated since Ethan's Birthday party so it is time for an update. All has been well in our household. We are keeping ourselves busy chasing around after Ethan and just living life.

Ethan had a hearing test today. This was the first test since the newborn hearing screen. He did well and the Audiologist found no signs of hearing loss at this point. The only concerning thing is that his left ear has fluid in the middle ear area. He does not have an ear infection but the fluid is there. The Audiologist said it could drain on it's own or it could cause a problem. They want to see him back in 8-12 weeks. I'm not really sure how often on OIer should have a hearing test but I thought once a year was appropriate. I guess I will take him again in 3 months just to make sure the fluid isn't causing an issue and then switch to yearly? Not sure. I will definitely mention the fluid to his Pediatrician and see what he has to say.

Ethan's surgery date is getting closer. We are about 6 weeks out now. The fearless daredevil just gets stronger and more fearless daily. He is pulling himself up and sometimes putting a little weight on that left leg and he even climbs on top of things. We can't wait to have his legs rodded so he can stand on that left leg. He will take right off once he heals.

Speaking of surgery we had the pleasure of meeting another OI surgeon (Dr. E) a week or so ago. He was in the area for a conference and he was nice enough to meet with us. We have been quite concerned about Ethan fracturing before his surgery date especially since Dr. F will not be available the month of May so we had been in contact with Dr. E through e-mail. He was very nice and quite reassuring. He agreed with the plan that Dr. F had presented and stated that we could contact him if we needed to. We certainly felt better knowing we have another option and since both surgeons are amazing we know Ethan would be in great hands either way.

Ethan is due for treatment this coming week and this will the be the last one he receives for several months. I believe Dr. F waits 4 months after surgery before resuming treatment. I certainly won't miss the IVs and such but I sure hope Ethan can make it that long without too much pain or any other issues.

I will leave you with a few video clips of Mr. E

Giggle Toes

Dance Dance

First Birthday Party

2010-04-11T18:15:00.000-04:00

We celebrated Ethan's 1st Birthday with a party yesterday. We all had a great time and had a few surprises. Both of Neel's brothers flew in and surprised us so that was nice. Ethan received tons of gifts and had a good time eating his owl cake.

I created a video montage to play during the party of his 1st Year. I get all teary eyed each time I watch it.

First Year Video Montage

I also have some photos to share of his party.

First Birthday Photos

Thanks to everyone that joined us for the party and a special thanks to those that helped with setup and clean up!!! I was exhausted by the end. :)

First Birthday

2010-04-07T11:40:00.002-04:00

Ethan's 1st Birthday was yesterday, April 6, 2010. Neel and I are honored to be Ethan's parents. He is truly amazing and such an inspiration. One year ago we were terrified, not knowing what to expect when my water broke and Ethan decided to make an appearance 3 weeks early. OI was such a scary diagnosis and honestly I wasn't completely convinced yet that he was going to survive. Little did I know our little E was such a fighter and such a strong little guy. He is amazing and I couldn't be more proud to be his Mama. Happy Birthday Little Man! Mommy and Daddy love you so much!!!!!

We spent Ethan's Birthday doing what he wanted. We played all morning, had pancakes for breakfast, his favorite pasta for lunch, and then we headed to the zoo. We had a great time checking out the animals and riding the carousel. We are also having a party on Saturday for family and friends but it was nice spending his actual birthday with our little family unit - just the three of us.

Ethan's 1 Year old stats:
15lb 1.5oz - He lost a little over a lb after being sick for 3 weeks.
27.5 in

Of course I have photos of our birthday fun:
Daddy and Ethan at the Zoo

Riding the Carousel

Having Fun

Petting a baby gator

Yummmm...ice cream

Birthday Cupcake

Had a lot of fun smashing it

1 Year Old

Trying to escape

Easter

2010-04-06T11:19:00.002-04:00

We just celebrated Ethan's first Easter this past weekend. He was still getting over the virus but he had a great time. We went to church with my parents and then hunted for Easter Eggs afterwards. Ethan wasn't too interested in the Easter Egg hunt but I had enough fun for the both of us. We also had a great time hanging out with family and catching up.

Today is Ethan's birthday! We are going to the zoo to have some birthday fun so I will post about this later. I wanted to put up his Easter stuff before I forget.

My Easter Basket

Mom and Dad's Easter Basket ;)

Opening Easter Basket at Grandma and Grandpa's House (CJ, Ethan, and Zach)

Yummmy...Marshmallow Bunny

First ER Visit

2010-03-31T10:53:00.000-04:00

Of all of Ethan's firsts this is one I would gladly avoid! Ethan has been sick for going on 3 weeks now. It started with an ear infection which was better after a week but then he developed a cough and vomited on a few occasions. I took him back to the Pedi and he was diagnosed with a virus. He did not have a fever and he was still eating and drinking just not as much as he would normally.

We are on day 12 of the virus now and it has progressively gotten worse. We went back to the Pedi again on Saturday and again they did not want to start Antibiotics. By Monday night the cough had gotten even worse and he sounded congested in his chest. This was enough for Neel to call him in an antibiotic. So he started Omnicef. He took 2 doses and then yesterday afternoon he had a runny bright red stool in his diaper. This was scary to say the least. It looked like blood.

Neel read about the side effects and apparently Omnicef can bind with iron in the intestinal tract and cause reddish stools. Ethan had also been having intermittent episodes of pain where he draws up his legs and cries so based on this and the stools we felt it best to take him to the ER to rule out Intussuception.

We were there for 5 hours and he had xrays of his chest and abdomen, an ultrasound of his abdomen, and they tested the red stool for blood. Everything checked out OK. No blood in the stool and his abdomen and chest was clear. So it was just the antibiotic causing his stool to be red.

He is still sick though so we are continuing the antibiotic and praying that he gets better soon. They weighed him and he has lost a whole pound in 3 weeks. That is quite a bit for a baby that started out at 15lbs 10oz. I am already increasing the calories of his formula and trying to get him to eat high fat foods. So I called his Pedi's office again today and we are going to add Pediasure to see if this helps. I'm pretty much at a loss of what else to do. Any ideas are welcome!

I am feeding him buttered noodles, spaghetti, pudding, yogurt, and just about anything else he seems interested in. Anything hard makes him cough right now and he ends up vomiting so we are sticking to soft foods.

Even though he is sick he is still very active and happy most of the day. I have a photo we took at the ER last night. This was his first hospital gown and of course he looks cute as ever!

We have a surgery date!

2010-03-24T09:33:00.000-04:00

I just received a call from Montreal and Ethan's surgery is scheduled for June 9. Unfortunately Dr. F is booked up through April and he is out the month of May so this was the first available date. It is a little over 2 months away which seems like forever but I have a feeling it will go by quickly.

Ethan will be 14 months old by that date. He will be having his left femur and both tibias rodded in one surgery. I am nervous and excited for him all at the same time. We have about 2.5 months to prepare.

Followup Xrays

2010-03-23T17:06:00.000-04:00

We saw Ethan's local Ortho today for xrays. The xrays will be sent to Dr. Fassier and he will hopefully schedule Ethan's rodding surgery. We have already e-mailed Dr. Fassier with the xray images but I think he needs them on disk in order to measure so I will be mailing them tomorrow the fastest route possible.

Ethan's right femur and tibias do not seem to have changed in the last 3 months which is good I guess. The left femur is 3mm shy of the 10cm Dr. F wanted it to be for rodding (according to the local Ortho's measurements). He said it should be at 10cm by the time the surgery is scheduled. So that was good news BUT he also thinks there is a non union in the left femur. It looks like the fracture from birth has not healed completely or possibly that Ethan has had several microfractures. He also said that once it is rodded it should heal properly. So we are anxiously awaiting a response from Dr. F about when/if he will schedule the surgery.

I was surprised at the news of the non union because I would think Ethan wouldn't move the leg because of pain. Dr. W does think Ethan is experiencing some pain which is why he doesn't want to crawl on his knees. This is hard for a Mom to hear. It saddens me to think that Ethan has been in pain all this time and we had no idea. He has actually been getting up on his knees lately but nowhere near crawling and it doesn't seem to hurt him but there have been occasions when his foot would get caught on something or his left leg get bumped and he would cry for a few minutes. I think this might be when he has sustained micro fractures. He would move his leg afterwards and when I poked around on him to see if he would react (to check if it is broken) he doesn't even flinch. So I assumed that it wasn't causing him pain but now I'm not so sure.

We are now determined more than ever to get the femur rodded as soon as possible to alleviate any pain and get him on his way to having some internal stabilization and straight legs.

I have a few photos to share just to show you how happy this little guy is most of the time.

Sleep Training

2010-03-21T11:01:00.001-04:00

Ethan is a little over 2 weeks away from his 1st Birthday and we have still been struggling with sleep. I had previously mentioned that he slept through the night for the first time EVER while we were on vacation in California. I was really hopeful that he would continue once we came home. We have been home 3 weeks now and no luck.

Neel and I decided it was time to do some Sleep Training. I tried once before a few months ago but it did not go well at all. First I have a very hard time with the idea of letting Ethan cry. So I don't think I was very committed to the process at that time anyway. Second, Ethan would kick his crib and I was afraid he would hurt himself. He also had the ugly, snot running down his face, to the point of vomiting, kind of crying going on. That ended quickly as I gave in and picked him up. Neither of us were ready at that point....obviously.

BUT....it seems we are both ready now. He seems to sleep better in the Pack N Play instead of the crib so we are using the PNP for now. I don't have to worry about him hurting himself so that makes this easier too. We put him down awake last night when he was sleepy. He did cry and I went in the first 2 times to pat him and reassure him for a minute or so. After he started yelling Mama Mama I started crying with him so Neel had to take over. What can I say...I'm weak! Neel did great though and Ethan finally fell asleep. He woke up at 1am so I fed him and then put him back down again while awake. He cried again but only for 1-2 minutes and he was fast asleep. And the best news.........after this he slept until 7am. Woo Hoo! I did hear him whimper and whine a few times but he didn't really wake up and went back to sleep on his own.

We did the same thing for nap time today and he is sleeping right now. It took maybe 5 minutes for him to fall asleep this time. I really hope this is our answer and Ethan, Neel, and I will all be sleeping well in a few days!

On a lighter note, we have been getting outside more due to the fantastic weather. We took our first stroll through the neighborhood in the wagon.

Ethan has also recently gotten his 3rd haircut. He looks like such a big boy now.

11 Months Old, Vacation, and another Treatment

2010-03-11T14:06:00.002-05:00

We have been BUSY lately. In the past week and half we took a week long vacation to California, Ethan turned another month older, and we just got home from his latest treatment.

While in California Ethan met his Ba (Neel's Grandmother), Nikhil Mama (Neel's Uncle), and Bijal Maami (Neel's Aunt) for the first time. I hope I spelled all of those correctly. :) It was great to meet them and fantastic for Ethan to meet more of his family.

We also had a great time hanging out on the beach, checking out Hollywood, and visiting the San Diego Zoo. I have quite a few photos so I will link to them. We were in Hollywood right before the Oscars so we actually walked on the Red Carpet. That was pretty cool. It was covered in plastic but I doubt I will ever be able to see it again.

California 2010 Vacation

Now on to Ethan's 11 month birthday. My little guy is less than 1 month away from his 1st Birthday. Where has the time gone? I am busy planning his party.

11 Months in the Chair

Raise the Roof

11 Month stats:
15lbs 10 oz
27.5 in

Ethan had his first outpatient treatment this week. It definitely goes much faster. We had the IV placed pretty quickly and the meds came up from the pharmacy soon after and we were on our way. I think we arrived a little after 11am and Ethan's meds were flowing by 11:35am.

After we leave each day I have to flush the IV before he goes to bed and again when he wakes up. This was easy to do and I didn't have any problems. All went well until the night of the 2nd day. Ethan woke up screaming and flailing his IV'd hand around. We had it covered in coban to keep him from pulling it out so I had to remove that to take a look. That took some time because it had been on for 2 days and the stuff seems to melt into itself. I finally removed it and saw a little blood in his line but the IV looked like it was still in. I tried to flush it, all the while Ethan is screaming and squirming everywhere, and it would not flush. I decided to pull it because it was causing so much pain. Unfortunately I was not prepared to do this. I didn't have scissors or anything ready to remove all of the silk tape. I eventually got desperate and literally chewed the tape off. I tried to peel, pull it, etc and it wasn't coming off so I shredded it with my teeth. I was then able to get to the IV and pull it out. There was barely a drop of blood so the IV had obvisouly come out of his vein but was still under the skin which I was told by the nurse can be very painful. :( I know next time to be prepared in case this happens. Once I did this Ethan calmed down and went back to sleep. He slept well the rest of the night. Whew!

The next morning a new IV was placed and he received his last day's treatment. In all I definitely like the Outpatient Infusion Clinic. The whole process is much faster and afterwards we can leave and sleep in a hotel room where we actually get to sleep unlike the 3 day inpatient stay.

Ethan has fun wherever he is. The space is small and there isn't much to do for the 4 hour infusion but this little guy finds a way to stay entertained.

IV Pole Dancer

Playing Peekaboo!

Meeting the founders of the OI Parents Yahoo Group

2010-03-01T11:07:00.006-05:00

We are in California for vacation right now and we were fortunate enough to meet Cecilia and Amy while here. I can't even tell you how grateful we are that Amy started the OI Parents Group through Yahoo Health. We have received so much support and so many answers to our questions from the parents in this group. Ethan's condition is rare and without the guidance of these parents who have paved the way before us Ethan would not be doing as well as he is.

Thank You Thank You Thank You Amy and Cecilia!

The Desai and Phelps Families

From L to R: Me, Ethan, Neel, Jonathon, Amy holding baby James, Mike holding William, and Andrew on the floor.

Jonathon is almost 10 yrs old and he as OI also.

Ethan and James

Ethan LOVED baby James. James is almost 6 months old and outweighs Ethan by about 6.5-7 lbs. He is a BIG boy. Ethan was being cute wanting to hold James hand but then he tried to pull his ears, stole his toy, and pulled his sock off. We definitely need more socializing time with other babies so he can learn to share and how to behave with other children.

Ethan, Jonathon, and James

Cecelia, Me, and Ethan. Cecelia is Amy's Mom and helps with the OI Parents Group. Ethan had fallen asleep here

It is time for Ethan's nap and once he wakes up we are off to the beach. I can't wait to see what he thinks of digging in the sand. :)

Sitting up

2010-02-20T21:41:00.000-05:00

Yay! Ethan decided to do something new today. He was crawling around on the kitchen floor and a few minutes later he was sitting and playing. I did not see him sit so I grabbed the video camera to see if he would do it again and he did. :) He gets stronger every day.

Ethan pushing up to sit

Swim Pics

2010-02-20T18:11:00.000-05:00

Neel and I decided to take Ethan back to the pool today since he did so well yesterday. He really enjoyed it today. He is definitely a little fishy that loves water. We have some pics and a video to share this time.

Swimming with Daddy

Swimming with Mommy

Hanging onto the side of the pool all by myself

I love to splash

Swimming is so much fun

Disclaimer: Ignore the blob that is twirling Ethan around in the water.

Ethan playing in the pool

Swim Class

2010-02-19T17:49:00.000-05:00

Ethan started swim class this morning. It was hard getting out the door and getting both of us there and in our swimsuits by 8:30 but we made it. Going anywhere since having Ethan takes so much longer now. :)

He did great for his first lesson. He loved the water but mostly stared at the other two babies. His eyes were as wide as saucers and he just soaked it all in. He did do quite well holding on to the side of the pool but didn't really like swimming on his back. He swam from the instructor to me several times (a little more than arms length away). His face went into the water each time but he didn't drink the water. He was kicking those legs and arms and working hard. He came out wide eyed but never cried. It was definitely a workout because he fell asleep 5 minutes after we left.

The other 2 babies are on their 2nd 6 week course and I was quite impressed with what they can do. I can't wait to see Ethan progress and earn his water wings.

I didn't bring a camera so I do not have pictures this week. I couldn't take any since I was there alone with him. Maybe next time I can work it out.

Clapping

2010-02-13T10:16:00.003-05:00

Guess who just started really clapping this morning? :) He has really made my Valentines weekend special. I'm afraid to leave now.....he might start talking in sentences or something while I'm gone.

Neel caught it on his Iphone again so the video isn't great but here it is. :)

Ethan Clapping

Trying to stand - on one leg

2010-02-12T21:50:00.002-05:00

Ethan decided today he was going to pull himself up to stand. He does so only on his right leg with his left leg kind of blowing in the wind. :)

This kid amazes me. I thought for sure he wouldn't stand at all until after his left femur gets rodded. He doesn't even like to be up on his knees and then all of a sudden he just wants to stand.

We captured some of it on video. It was taken on Neel's iphone though so the video is not that great. I'm sure he will continue to pull up so I will get some better video soon.

I hope you enjoy watching this as much as I did. I am always proud of everything Ethan does. He is such an inspiration and his Momma is bursting with joy and love right now.

Ethan standing one legged

ENT

2010-02-12T19:26:00.002-05:00

We saw the ENT today to have Ethan checked out. He snores and wakes up frequently throughout the night so we decided to have him checked out just to make sure he isn't having problems breathing during sleep.

The ENT doc checked his ears and looked at his tonsils and found his ears to be normal and his tonsils of normal size. He then used a fiber optic camera that he placed in Ethan's nostril to look at his adenoids and throat. E wasn't very happy about that but it didn't last long so he was back to laughing a few moments later. Again his adenoids and "voice box" are of a normal size.

So the next step is a sleep study. The ENT said we should do it just to rule anything out but he didn't seem to think we would get answers. I have to call the sleep lab to make an appt for the sleep study. If nothing is found then I guess we are just going to be sleep deprived FOREVER!

Check out the big boy chair

I'm being a big boy waiting on the Doc

Playing in the snow

2010-02-10T15:16:00.009-05:00

Ethan played in the snow today for the first time. We weren't out long because it is really cold but he enjoyed it. We have quite a bit of snow. I hadn't realized it was so deep until we started plodding through it.

My little snow bunny

This snow stuff is kind of cool

Trying to make a snow angel

Say cheese

Me and Mommy

Ethan clapped his hands for the first time yesterday. He is still a little uncoordinated when he does it but it is so cute. He has been VERY active for the past week and I can actually feel a difference in his upper body. He is gaining tons of muscle since he started commando crawling. We are working on getting him to sit from a lying position. He can do it while he holds my fingers but he won't try it on his own yet. I'm sure he will soon.

10 Months

2010-02-05T14:44:00.003-05:00

My big boy will be 10 months old tomorrow! I need to start planning his 1st Birthday party. As of this morning he weighs 15 lbs 1 oz and is now 27.5 in long. So the weight gain is still slow but he grew an inch this month.

He is doing great. He loves crawling and getting into everything now. He makes the cutest budden budden noise the whole time he is crawling. :) It is how he revs up his engine.

Playing on the floor looking super cute

Trying to mesmerize you with his eyes. :) Works on me every time

My 10 month pic in my chair

Hanging over the back of the chair

Welcome to my room!

1st Dentist Appt

2010-02-01T15:59:00.003-05:00

Ethan had his first Dentist appt today and it went really well. He does have D.I. as we suspected. I really like the Dentist. He was very careful with Ethan and concerned with his comfort. We had a lengthy discussion concerning what to expect with Ethan's teeth and what can be done down the road. For now we will be brushing Ethan's teeth and taking him to see the Dentist every 6 months.

Ethan LOVED having his teeth brushed. This is great! I was hoping he might like to chew on it so we wouldn't have to battle with him over it daily but this is even better. He even did some of the brushing himself.

The Dentist also noted that he could see and/or feel more teeth just below the gums so we will probably see a few more in the next few weeks. Yippee....more teething. LOL!

Snoring and DI

2010-01-31T13:30:00.007-05:00

We have a few OI related appts coming up in the next week or so. Ethan has regressed again with his sleeping habits and wakes several times at night. He has what I thought was a stuffy nose since birth. We have been treating him with saline drops and a humidifier but it doesn't seem to make a difference and he now snores. I started thinking it probably isn't normal for a 9.5 month old baby to snore so I posed the question to the OI Parents Group as well as my Online Mommy Group. As I suspected the OI Parents responded with MANY stories of their kids having their tonsils and adenoids removed and/or sleep apnea and the Online Mommy Group's babies are not snoring. So we decided to take Ethan to an ENT to have him checked out. It is possible that his sleep issues are medically related. If so, I assume we will be able to do something to alleviate the problem and he and I will start getting a better quality sleep.

Tomorrow we are seeing a Pediatric Dentist for Ethan's 1st appt. He has 2 teeth now and we are pretty sure he has DI (Dentinogenesis Imperfecta). I really just need the Dentist to confirm this and then tell me what I need to do to take care of his teeth. When he gets older and we need intervention I believe there is a Pediatric Dentist on staff in Montreal that has plenty of experience with OI children. For now I'm hoping our local Pedi Dentist will be able to help.

Since Ethan learned to commando crawl he is getting into EVERYTHING. Every day he gets faster. Yesterday I looked up and found him in front of the fireplace striking the glass with a toy and earlier today he crawled under the stand next to the couch and grabbed a power cord....this right after he bumped the stand and almost knocked the lamp over. I seriously need to babyproof the house. He is never left alone so I can't even imagine what he would get into if someone wasn't in the room. I'm going to have to get creative with some baby gates.

I have a new video of Ethan in his playroom crawling around.

Ethan Crawling in his playroom

Ethan and Mommy

Leaning in to grab his toys. He will stand on his right leg now to support himself but still no weight on the left leg...which is ok with me until it is rodded.

This is his favorite way to get to his toys since he can't reach them all from the outside

Showing off his cuteness while stretched across his fireman couch

This is one of his favorite things to do now. He loves music and this musical table provides tons of fun.

Commando Crawling

2010-01-22T19:38:00.002-05:00

Ethan has his own way of getting around. Sometimes he rolls and now he is doing his own version of commando crawling. He can't go for long distances yet but I'm sure he will soon. I can't wait to see him get up on those knees. He has gotten up on his knees a few times but then he usually flattens back out. I talked to the PT about it this week and he said Ethan knows it doesn't feel right on the left side. So we are doing some exercises to try and get him used to being on his knees.

He has also been trying to pull to a stand from a sitting position. He doesn't have the strength yet but I wonder how much longer that will be true. He got his butt off the ground today but then sat back down. Yikes! When he does stand (supported of course) he will only bear weight on his right leg. I think until his left femur is rodded he won't even attempt to stand on it. Only a little over 2 months to go before we revisit the rodding surgery.

I caught a little of Ethan crawling this morning on video.

Ethan Commando Crawling

Tooth Number 2

2010-01-18T15:38:00.005-05:00

Ethan's 2nd tooth popped through today. Needless to say he is not having a good time. He has been VERY fussy. I think this tooth is worse than the first one. I am excited that he is getting teeth though. We can't tell yet if he has Dentinogenesis Imperfecta. The first tooth looks a little translucent (what part of it we can see) so I think he probably does have DI. I have already been in contact with a local Pediatric Dentist. I have just been waiting for Ethan to get teeth before we make an appt. I may make it soon because I need to know if there is something special I need to do to take care of his teeth, especially if he has DI.

I have an update on Ethan's weight loss. Since coming home he has gained 10 oz. Yay! He is now up to 14lbs 14.5 oz. The hospital always throws him off schedule and he just doesn't eat as much but he is doing fine now.

I also pulled a few pictures of the camera this morning from Montreal as well as his first art project.

Hanging out with Carter in the Playroom waiting for OI Conference. Carter is 3 and has type 3/4 OI as well.

Getting checked out by Stephanie - the Montreal PT

Showing Stephanie I can move to the left and follow the toy

Showing Stephanie my mad sitting skills

....and my very first Art Project created in the playroom at Nationwide Children's Hospital in Columbus, OH.

9 Month visit

2010-01-15T16:45:00.003-05:00

Ethan had his 9 month checkup yesterday. This was one busy week for Ethan with the treatment and then a Dr. appt. I thought it wouldn't be so bad since he shouldn't be getting shots at this visit. Well I was wrong. :(

First they had to do a finger stick to check his hemoglobin. He did ok with that but then he received 2 shots....boosters for the H1N1 and regular flu. When he was supposed to receive them the shots weren't available and his Pedi thought he should get them now since he goes to the hospital every 8 weeks. Ethan was not happy to say the least but once I got him dressed and hugged on him for a few minutes we left the room and he was fine.

Ethan lost a little weight this week...probably because he was in the hospital for 3 days. It throws him off schedule and he doesn't eat as well. He weighed in at 14lbs 4 oz and is 26.5 in long. Hopefully he will put the weight back on plus more. He is eating more but it is sporadic. Sometimes he does well and sometimes he doesn't. I asked the Dr. when we should start trying whole milk and he said to wait until 12 months and even then to slowly introduce milk. We are hoping it will not cause gas issues like he has had in the past.

Other than that Dr. C said he is doing great. I caught him up on our visit to Montreal. He is also going to check into how often Ethan should have his hearing tested. He said we would do it at 12 months and then go from there. We do not believe Ethan has a hearing problem at this point but he is at risk of hearing loss so we do have to periodically check.

Treatment Update

2010-01-13T20:24:00.004-05:00

Ethan just completed another 3 day Pamidronate infusion. Everything went well. Once we make it past the IV the rest is pretty smooth.

We did decide this was his last inpatient infusion (YAY!). So in March when we go back he will be going to the infusion clinic. He will have the IV placed and the first 4 hour infusion. Once this is complete we get to leave and go to a hotel. The next 2 days we will just come in for the 4 hour infusion and after the last day of infusion the IV will be removed.

The procedure is still the same except for the hourly "checks". I get really irritated with some of the nurses because they insist on taking Ethan's temp and checking his respirations every hour (even after the infusion is complete for the day). A few times during this week's visit he had just fallen asleep so I refused to allow them to touch him. Especially after I politely told one nurse he was asleep and she said 'Oh I'm not going to wake him' and then proceeded to take his temp and woke him up. Grrrrr! That was it so the next time she came in and he was asleep I told her No. He was asleep and exhausted and not to touch him. She just turned around and walked out.

Of course the fact that I will get to sleep in a real bed is a BIG bonus too. :)

We did roam around the hospital when we had the chance just to get out of the room. At one point we were near the elevators looking at the fishies in the aquarium there. I look up after a few minutes and we had 5 nurses standing there watching Ethan. Apparently he attracts a crowd. Ethan also joined in an art project in the play room (his very first). It's a masterpiece of course. ;) I will upload a pic of it once I can get it off my phone.

I did bring an air mattress this time which Ethan loved of course. He rolled all over it and had a blast.

Here he is sitting on the air mattress and just showing off his beautiful smile

9 months strong - Random Thoughts

2010-01-11T19:28:00.004-05:00

So I haven't posted a blog update in a while - but I thought I would today. Ethan has been doing great - his pamidronate treatments have been all the difference in where he is today. He is getting his 3 day treatment in Columbus - Deb is up there with him and her mom until Wednesday.

He is definitely getting more bold and has a mind of his own - maybe a little stubborn too ( I think he gets that from Dad - maybe Mom too..haha ). He definitely does not like getting blood drawn - he screams his little head off until sometimes he chokes on his tears - so it was pretty hard when we were in Montreal and it took them 3 sticks to get his blood.

He also is a wiggle worm now - the moment you put him on his back to put on his clothes, or change his diaper, or whatever, he fights you and rolls over to his left immediately.

He also started this headbanging thing - where he will lie on his belly and bang his arms up and down and bob his head up and down like he is listening to some rock music - it's so funny!

I am sure Deb will eventually post a video of it eventually - I can barely figure out how to write a post on this thing. We are waiting on the Physical Therapist from Montreal to email us some exercises we can do to help with Ethan's torticollis - he still likes to tilt his head to the right side.

We have been massaging his neck - so that has been helping - who wouldn't want their neck massaged? :)

Unfortunately, the sleep thing hasn't changed much - he still does not sleep through the night and Deb is usually a walking zombie until she is relieved by me, her sister, or her mom. Poor Mommy. Yes, and don't tell Deb to let him cry it out because she already said the next person that tells her to let him cry it out is going to get decked. I am guessing that is the sleep deprivation talking?

Anyways, I try to help - when I am home on Tuesdays or weekends - I will take him in the morning - so we have our shifts. I think a lot of it was her feeling comfortable with me handling and taking care of him - she trusts me now - in the beginning I don't think she trusted anyone with him, not even herself. We have come so far - even when we notice that he isn't developing like other children, we are still proud of how far he has come. He just brings so much joy to our lives and other people as well. I will show my grumpiest patients his picture and they will just light up at his picture and always ask me how he is doing whenever I see them at their following visit - he is building his own fan club!

And have you seen how happy this baby is? He just loves people and making friends with everyone.

It's like Deb said - for all the fussing, crying, whining, sleepless nights, and worrying - he will smile at you in a split second and it's all worth it. I have to give credit to Debbie again - she is an amazing Mom - you can tell by how much E adores his Mommy - he only wants her when he needs someone the most and Mommy is always the first one to put a smile on his face and make it all better. I honestly don't know how she does it - and have a ton of respect and appreciation for her and so does Ethan.

I know she has been under some stress recently with everything going on with Ethan - but I want her to know Ethan and I appreciate everything she does for us and our family and she is a big reason why our little boy is so happy and brings a smile to everyone he touches!

Sorry for the long post - I just had some random thoughts on my mind - probably didn't make any sense - but it is good to update everyone on what's going on with us and Ethan. Thank you for all your support and prayers - we wouldn't be where WE are without all our friends and family either.

Montreal Visit

2010-01-06T22:04:00.002-05:00

We are home from Montreal. Apparently just in time for a snow storm...yay I can't wait! :(

Ethan's first OI Clinic went well. The blood draw was a nightmare but I never like that part anyway. Dr. Fassier reviewed Ethan's xrays and decided against doing surgery right now. Basically Ethan's femur is small and the risks outweigh the benefits at this point since he is not fracturing or pulling to a stand. Dr. F wants to review his xrays again in 3 months and if he has had enough growth he will book the surgery. If in the next 3 months Ethan fractures his left femur or starts pulling to a stand then he also agreed to go ahead with the surgery. We are happy with this outcome. We certainly do not want to put Ethan through rodding surgery that would be riskier because of the size of his femur and require surgery again sooner rather than later again because of the size. We are still very concerned about a displaced fracture but at least if he starts pulling to a stand (which puts him at risk of fracturing) Dr F. agreed to do the rodding anyway.

On to better news - Ethan's bone density looks good. His dexa scan resulted in a z-score of -1. The normal range is -2 to +2 so that puts Ethan within normal range.

His spine and skull xrays also looked good. I was very concerned about compression fractures or curvature of his spine. They did see some changes on his T12 vertebrae which could be a compression fracture but it wasn't "flattened" just slightly different. They did not seem to be concerned about it at all.

I really liked the PT Stephanie. She was impressed with the fact that Ethan is sitting independently and that he can roll and scoot, etc. She is going to work with our local PT on some exercises to help with the torticollis. There are some safe stretching exercises that can be done so we are looking forward to starting on that.

Neel and I are definitely impressed with the Drs and staff in Montreal. They were all very caring and helpful. We definitely feel like Ethan is in good hands there.

We had the opportunity to meet another family while in Montreal - the Browns. Carter is 3yrs old and has OI type 3/4 as well. He is so cute and Ethan really seemed to like him. He kept touching Carter's arm and smiling at him. :) I hope we get to meet up with them again in the future.

Now we have to get back to normal life. Ethan is scheduled for treatment next week in Columbus so off we go again.

9 Months

2010-01-03T17:09:00.004-05:00

Ethan will be 9 months old on Jan 6. We are leaving for Montreal tomorrow so I thought I would go ahead and share his 9 month old pics in the chair (my favorites!).

Ethan is now sitting independently and starting to bear weight on his right leg. He doesn't put his left leg down much (smart kid!) because of the shape of his left femur. He did something else today that surprised me. He wanted out of the chair while we were taking pictures and he normally reaches for me and waits for me to pick him up.....NOT ANYMORE! He rolled over onto his belly and scooted backwards until his legs were off and then he used his hands to push himself off until his right foot hit the floor. He then pivoted and sat down. I was waiting to catch him if he fell but he did great.

He still hasn't crawled for me but he is getting great at scooting backwards. I will put a toy out of reach and encourage him to crawl forward to get it. He tries really hard but he always ends up getting further and further away. He will figure it out soon enough.

This time tomorrow we will be in Montreal. I am still a nervous wreck. I have been packing and gathering all of our things today so tomorrow won't be anymore stressful than it has to be. Ethan's appt is on Tuesday and we will also find out then whether or not Dr. F will rod his left femur or if he wants to wait. Wish us luck!

He weighed 14lbs 10oz today and is 26.5 in long.

My 9 month pic in the chair

Looking cool in my vest

I'm done here....time to get down

Just a little more....

Almost there....

I did not take a picture of his actual dismount. I put the camera down in preparation of catching him if he were to fall. He did not fall at all. I was shocked at how well he managed to do this for the first time....so I let him try it twice more. LOL...he did just fine all 3 times.

Christmas and a TOOTH!

2009-12-27T22:28:00.003-05:00

Ethan celebrated his very first Christmas. Apparently he was a very good boy this year because he received a ton of gifts.

Neel surprised us on Christmas Eve with the news that he was not working. Originally he was supposed to work a 1/2 day. So we opened our gifts at home to one another on Christmas Eve morning. Ethan wasn't too interested in opening gifts. He started out trying to get to the Christmas Tree but once some of the toys were open he wanted to play with them.

After this we loaded up the car and drove to my parents house. Since we were early we tried to make it to my Grandma's house while everyone was there exchanging gifts. We had to stop a few times with Ethan so we didn't make it but most of the extended family waited on us so they could see Ethan. We visited with them for an hour or so and then went on to Mom and Dad's.

We opened more gifts at Mom and Dad's house on Christmas morning. Ethan again received tons of gifts but all he wanted to do was eat the paper. LOL! We ate a huge feast around lunch time and then played with all of our Christmas gifts.

As it turned out my Aunt Christine and Uncle Bob decided to visit later that evening so we stuck around so we could see them. I'm glad they finally got to meet Ethan and it was nice for me too. This is why I love Christmas so much. It's great to catch up with family and everyone is in a good mood too. :)

After coming home Ethan actually slept well....for 2 nights in a row now. I thought for sure it was a Christmas Miracle! Then today I felt in his mouth and my finger touched upon something hard. HE HAS HIS FIRST TOOTH!!!!!! It is just at the top of the gum line so it isn't really through yet but I can see it and feel it. Woo Hoo!

I didn't take many pictures. I guess I was having too much fun. Here are a few from Christmas Eve.

Playing with his new alphabet drum

What is this thing on my head?

Yummmm.....bows!

Mommy's Christmas present......

Eating the seatbelt in my new wagon while Mommy takes me for a stroll around the room

He Crawled!

2009-12-22T23:31:00.002-05:00

Ethan crawled for the first time this morning and............I wasn't here to see it. :(

Neel and I took a much needed night to ourselves and my sister spent the night here to take care of Ethan. Apparently Tom, Ethan's PT, was holding a toy that Ethan wanted and he was coaxing him to come forward to get it and he did. According to Shama, Ethan shimmied his little booty forward and grabbed it. He has been scooting in circles on his belly for some time now and we have been waiting for him to start going forwards or backwards.

Of course I tried several times today to get him to come to me but he wouldn't move. Apparently the toys I had just weren't enticing enough. Either way this is exciting so I had to share. Now I have to figure out a way to get him to let me see him do it. Maybe cookies will work!

Left Femur

2009-12-16T21:23:00.003-05:00

We have had one busy and worrisome week. Ethan had a followup appt at the local Ortho on Monday. We have been increasingly concerned about his leg length difference as his right leg keeps progressively outgrowing his left. The last time I saw Ethan's femurs on xrays was when he was around 6 weeks old and they were both bowed with the left being more bowed than the right because of the in utero and at birth fractures. I was quite surprised to see just how bad his left leg has gotten. I have included the xray below. The angle of the bone puts Ethan at great risk of a bad displaced fracture.

The local Ortho wanted to do surgery to place a rod in his left femur "as soon as he clears anesthesia". I said No because we have an appt on Jan 5th to see Dr. Fassier in Montreal. Dr. F is an OI specialist and at this point the only surgeon I would trust to touch Ethan.

Originally we were planning to address Ethan's left femur with Dr. F on the 5th of Jan and go from there. One of the other OI parents suggested we forward E's xrays to Dr. F and request that he do surgery while we are there. I can barely breathe at the thought of E having surgery in just a few weeks but we decided to follow this suggestion.

We heard back from Dr. F today. He agreed that Ethan will need to have his left femur rodded and his tibias as well at a later date. He wants to evaluate E first during our Jan 5th appt but he blocked off OR time on Jan 13th for the surgery if we all decide to move forward. Ethan will be 9 months old at that time and we don't know if his bone will be big enough for the FD rod (a telescoping rod used for most OI long bones). If not he may need to use a different type of rod which requires more intervention as the bone grows. We are very hopeful that he will be able to use the FD rod.

I am trying to stay positive and resist the urge to wrap Ethan in bubble wrap but I have a ton of anxiety over the thought of Ethan having surgery soon. On the flip side I have a ton of anxiety that Dr. F will decide not to do the surgery and Ethan will have a displaced fracture. We would like to spare him the trauma of a displaced fracture if at all possible.

E's mostly straight right femur

The horribly bowed left femur

Sitting and jumper

2009-12-09T22:08:00.002-05:00

Here are a couple of recent videos of Ethan.

We have been trying to find a safe way for Ethan to start weight bearing on his legs. Although some OI parents do not recommend using doorway jumpers, we decided to give it a try. It has been working well for us.

Car Jumper

We have also been working on helping Ethan sit independently. He is doing well and can sit for 30-45 seconds before falling over.

Sitting and playing with toy

8 Months Old

2009-12-08T16:17:00.004-05:00

Ethan turned 8 months old on Sunday. He has continued to do well. Some of the new things he has accomplished is that he says Da Da and Ma Ma now as well as tons of other things that make no sense while he babbles. He can sit independently for about 30 seconds or so before getting distracted and falls over. He can scoot on his belly and/or roll to get to where he wants to go.

His favorite things right now include ANYTHING he can chew on and the Christmas Tree. The tree rotates and he has a blast trying to grab the ornaments as they pass him by. As far as the chewing goes I have been waiting for months for that first tooth to pop through and well.....we are still waiting!

He has also decided over the past 3 weeks that he no longer likes pureed baby food. He will not take more than 2 bites. I got worried about it for a week or so but then realized that he will eat whatever I'm eating. So now I just give him small bites of whatever I'm eating (chicken, cheese, pasta, turkey, potatoes, green beans, bananas, apples, etc). He will also eat baby snacks (puffs, yogurt melts, etc).

His weight gain has slowed down quite a bit since he turned 6months old. I think the baby food strike didn't help either but he is starting to gain again. As of yesterday he weighed 14lb 4 oz and is now 26 inches long. Still a little peanut.

In PT news we are working on the independent sitting, his torticollis, and weight bearing on his legs. We bought him a doorway jumper this past weekend and of course he loves it. He is just starting to put a little weight on his legs but he mostly pushes off with his right foot and turns in circles. I videoed him and will upload it once I get it off the camera and onto the computer.

Here are some recent pics:

This is what happens when Scrubs or Susie walks by. He tried to jump out of the chair and onto the dog.

Reading my book.

My 8 Month old pic in the chair.

Not too sure about this Santa character. He just kept staring and Santa and then looking back at me like 'Why is this old dude holding me? I don't think I like it.'

First Christmas Tree

2009-11-30T20:19:00.004-05:00

We put up our Christmas tree today. This is Ethan's first Christmas tree and seeing his reaction is priceless. He wants to hold it. The tree rotates and he keeps lunging for the ornaments as they pass him by. He really likes the ornaments that jingle.

:0) I love my tree

Sitting in front of my tree

Ethan and his tree

This is cool

We also videoed his reaction and a bonus video of him scooting on his tummy and saying Da Da.

Ethan's First Christmas Tree

Ethan scooting and saying Da Da

Thanksgiving

2009-11-30T20:02:00.004-05:00

Ethan celebrated his first Thanksgiving in St. Louis this year with Grandma and Grandpa Desai, Jay, Shaun, and of course Mommy and Daddy.

He had a great time visiting with family and he tasted turkey for the first time. He really enjoyed banging his spoon on Uncle Shaun's glass table during dinner.

Ethan enjoying Thanksgiving dinner

Hanging out with Uncles Jay and Shaun on the floor

Playing by myself

The Desai Men: Shaun, Jay, Grandpa, Neel, and Ethan

Messy Marvin

2009-11-23T08:47:00.003-05:00

I have been having a hard time getting Ethan to eat solids since last week while we were in the hospital for PAM. I assumed it was because he was off his normal schedule. I'm not so sure now since we are home and back on schedule but he still won't eat more than a few bites for me. He was eating 3.5 oz 2-3 times a day. This also means that he hasn't been sleeping well (yay for me). I noticed the more solids he eats the better he sleeps at night.

Every time I try to feed him we have a battle over the spoon. Yesterday I gave in since he wasn't eating anyway and let him feed himself. He ate more than he would have if I had tried to feed him....or I should say he tried to eat more. He mostly rubbed it on his face. By the end he had yogurt in his eyelashes, on his forehead, and well pretty much head to toe. LOL.

Feeding myself.....yum!

This is what happens when Mommy gives me the spoon. I did clean it out of his eyelashes before taking this.

All done and time to clean me up

PAM...again

2009-11-17T17:05:00.005-05:00

We are in Columbus getting Ethan's PAM treatment. We are thankful that we are even here. On Friday I received a call from the 'bone nurses' that the hospital census has been high and elective admissions were being bumped. Luckily on Monday morning the census was down and we were able to get Ethan admitted. Yay!

We have completed Day 2 of 3 of the infusion and Ethan is a little wild man....as usual. :) So far his IV is still good. It is wrapped up nicely though and then covered in a sock to keep him from chewing on it.

Each treatment gets more fun as Ethan becomes more mobile. He loves to roll and keeping him from doing that when he is hooked up has been fun. I have threatened to ace wrap his arm to his body to keep him from picking at the IV...this is why the sock is over it now.

We have tried many things to distract him. Such as......

Mamaw bought a monkey with eyes as big as Ethan's as well as a spongebob toy

Mommy bought him balloons. He likes the Elmo the best.

And of course we have been playing with him non stop. He giggles and laughs without much effort on our part.

He also gave me a kiss yesterday. He has been making a face that we call his fishy face. He was doing this and making kissy sounds so I put my cheek next to him and he gave me a kiss. Mommy was so happy!

He got up on his knees last night and today. He has done this a few times but for very short periods of time. He slept this way for a long time last night.....on his tummy with his butt up in the air because he tucked his knees under his body. Maybe this is a first step towards crawling!

Go Ethan!

First Hair Cut

2009-11-11T15:08:00.003-05:00

I finally broke down and had Ethan's hair cut for the first time. It was getting WAY too long on the top. I took him to Holli who also does my hair. She did a great job and she didn't even charge us. Thanks Holli!

Before my hair cut - this shows WHY I needed a cut

I loved the cape - made me feel like a super hero. :)

I sat very still for Holli and enjoyed my hair cut

The final product - my new "do"

7 Months Old

2009-11-06T10:33:00.002-05:00

My big boy is 7 months old today. :) He is now 13lb10oz and 25.75in. He didn't gain length this month and his weight gain has slowed as well. He is due for treatment in a little over a week so maybe things will pick back up once he gets it. Otherwise he is doing just fine. He has been rolling all over the floor and gets mad once he rolls up against something that he can't move....like the couch. LOL.

Hanging out in my chair

It's my 7 month birthday!

Smiling for Mommy

Mommy likes to put hats on me. :)