Good News: Hips!

One of the specialists Emma sees on a regular basis is an orthopedic surgeon.  Since Emma isn't standing or walking like a typical 3 year old and she has high tone in her legs there has been some concern about her right hip not sitting in the hip socket correctly.  Typically once it starts to get 20% out of the socket the doctors start to get concerned.  Emma's has been out as much as 38% out.  At her visit 6 months ago she was out 33% and the doctor gave us some initial discussion/indications about possible surgery in her future.  He also gave us certain stretches to do that could help her hip go back into place or - at the very least - help prevent it from pulling out further.  Chris and I were less than thrilled about that discussion and left with a renewed interest in adding stretches to Emma's daily routine.

Yesterday Emma had her 6 month follow-up and the x-ray showed that she is down to 27% out.  Yeah!  We are headed in the right direction and not discussing surgery at this time.  The doctor even mentioned that at her 6 month folow-up he will not need an x-ray unless his exam on her gives him concern and, if that happens, she'll go down the hall and have one done.  It is soooo nice to leave a doctor's appointment with good news for a change!

I have a feeling Emma's love of commando crawling and walking in her gait trainer are helping her make great gains with her hips.  Chris is also focused on stretching Emma each night as part of their routine and we will continue to make this a priority so we can keep surgery at bay.  We took the last two month off from horse riding because of the cold and snowy weather and hope to start Emma riding again in May.  Riding the horse helps give her legs an extended stretch and movement while she is enjoying a ride around the farm.  I've noticed that Emma's trunk has gotten weaker lately and mentioned this to the doctor.  He said the horse riding should help with her trunk muscles so I'm wondering if the break in riding is the reason for her "floppy" trunk lately.  I'm not sure if its the sudden change to warm weather or not, but I'm looking forward to seeing if starting up riding again will help her control her trunk muscles better.

A Day in our Life

I think that stay at home Mom is a total misnomer. I mean, who really gets to actually stay at home? Today I drove over 130 miles. We had an apt. for Emma, visited my parents, and came home in time for dance lessons.

Here are some snippets overheard on our road trip:

• Julia: Mom, is this your iPod on the radio
• Me: Yes (and hoping I don't get the request to listen to Signing Times because I am enjoying the one time I actually put on my music)
• Julia: Is this Lady Gaga?
• Me: No, try again.
• Julia: Pink! It's Pink, Mom.
• Emma: Aaahhhhh (I think she likes Pink as much as I do!
• Julia and I sing - So what, I'm still a rock star...
• Julia: Emma is a rock star!
• Me: Yes, you're right. Emma is TOTALLY a rock star
• Julia: And I'm a rock star too!
• Me: Absolutely. You and Emma are both rock stars
• Julia: And you too, Mommy. You are a rock star, too. Then she starts singing.
• Emma: starts laughing
• I am quiet and just enjoy the moment. My girls are rock stars!

Here is a brief summary from our visit to the orthopaedic surgeon:

• Emma is looking good overall and he is happy with her progress
• He isn't as worried about how tight her hamstrings are as her PTs, but did show us how to do the hamstring stretch with her and wants us to do it regularly
• He said she's ready for a gait trainer. I told him we're working with her PTs to get one for her, but it's going slowly. We've tried the Rifton Pacer and that seems good. We will test out the KidWalk on May 5th and I'm hoping to have a decision in early May on the gait trainer to order. It takes so long for insurance to approve the equipment that I really want to get a move on this!
• Emma walked for him! Yeah! Of course, it took Chris laying on the floor and she started walking right over to him. He was really happy to see how happy she was to walk and thinks it's great. He doesn't care if she walks with or without her braces - he's happy she is walking and said to let her do it whichever way she prefers because we really want to start getting her moving more.
• He noticed how tight her adductor muscles are and asked us to do a stretch to loosen them up. This should also help her not scissor (get her feet stuck on top of each other) so much when walking
• Her left hip is doing well. Her right hip is starting to come out about 20-25% and so the are going to watch this. The stretch for her adductors he showed us could help with this, so this is now going to be a part of our regular routine. Weight bearing, which she is doing well now, will also help with this. We do not want to have to face surgery if we can avoid it by implementing the stretches!
• We see him again in 6 months and they will take another X-ray of her hips then

Conversation at dance class waiting room:

• Questions about what Emma is drinking. It's her formula with sweet potato/zucchini puree mixed in. She was still hungry after dinner and so I added this to her drink and mixed it up before we left since we had to leave and I didn't have more time to get her to eat.
• Mom I don't know well(MIDKW) - So......what's the deal with her eating?
• Me: She has cerebral palsy
• MIDKW: Oh
• MIDKW to other Mom - I give parents of special needs kids a lot of credit. I mean, I love my children and all but I don't think I'd be able to handle it at all if there was something wrong. It just takes too much time. Oh, and teachers of special needs. I couldn't do that either. It would break my heart.
• Other Mom - I have a friend who has a child that is blind and autistic and it does take a lot of time.
• Me: Pretending I didn't hear that while I turn to another conversation. Thinking to myself that they missed all the fun times I had with Emma the last couple of days and only see the work. What a shame. They don't see Emma giggle when I hold her head out in the rain for her to feel it hit her face. She LOVES that! They don't feel like a rock star when their child looks at them. They might go to bed a little less tired than me each day, but don't pity parents of children with special needs. We don't need pity. An offer for a bit of help sometimes, yes, but pity, no.
• MIDKW - talking about how her child is having issues with her weight and they went to see a nutritionist. She is 45" and over 80 lbs. and if she continues on this track will have Diabetes by age 9. She has her on a new diet and she is doing well. I gave her some tips on healthy foods to make and also a couple of cookbooks. I have learned a LOT about cooking courtesy of Emma. She seems like she is really working with her child to get things under control.
• Me thinking: I hope she does, because if her daughter gets diabetes at age 9 wouldn't that put her in the special needs category? Especially if she was insulin dependent? And that leads me to other thoughts that I won't mention here.

Specialists Week

Emma sees quite a few specialists on a regular basis. I am sure that she has seen more doctors in her 2 years than I have seen in my entire life. She is now on pretty much a 6 month follow-up schedule and April was the month these appointments hit. This week we have appointments with the orthopedic surgeon and the pediatric neurologist.

Our last visits with these doctors in October were overall positive and I expect to hear more of the same this week. But..........I've been burned by this expectation before and it makes me more cautious about how I approach the specialist appointments.

I walk into each specialist appointment looking forward to telling them all about Emma's progress. I like to emphasize how amazing Emma is in overcoming obstacles and winning the hearts of so many people. At the same time I'm usually sick to my stomach that they might dole out more bad news or make some bleak prediction that I could do without.

Truthfully, I don't think that any of the professionals can predict Emma's future, so I'm not sure why I get so nervous. They see Emma for 15 minutes every 6 months and Emma is distracted - looking all around at what is in the room, the lights, the instruments, not caring a bit about doing anything for the doctor in front of her. They don't really get to see the side of Emma we see at home. The side of her that laughs at our silly antics, that is making great progress at trying to crawl and walk, that is always up for an adventure.

Chris and I know Emma and think that we have the best shot at predicting what she can do in the future. We will continue to check in with the specialists- to make sure her hips are correctly set, that she stays seizure-free, that her therapies are appropriate, etc. I'm sure that I'll always be a little nervous before the specialist appointments, but I'm predicting that as time goes by Emma will amaze everyone on her team.

The first time we heard of CMV

I've mentioned CMV in passing in this blog but haven't done a post specifically on CMV. And there is a good reason I haven't - when I first started researching CMV it scared the daylights out of me. So, I stopped looking into it for a while and focused my attention on getting Emma the medical treatment we wanted (i.e., Cochlear Implants), the medical insurance we needed, and the therapy schedule in place - all of which, quite frankly, is a lot of work.

And then I came up for some air! Today I look at Emma and know in my heart that she will be just fine. I think about CMV and I still feel some heartache and worry, but I am at a much better place today than two years ago. I am now ready to talk about CMV and our experience with Emma.

I first want to talk about the first time we heard of this awful virus and will follow it up with another post on CMV and prevention. For now, here is our story:

When Julia was about a year old we were thrilled to find out that I was pregnant. How lucky we are! I had a feeling from the very beginning that we were having a girl and I was so happy that the would be so close in age. Sisters!

This pregnancy was a bit different. I was sick from almost the very beginning - morning sickness - that lasted for about 8 months. Yuck! I was also very, very tired. I thought it was because I was so sick and also the standard pregnancy tired. I would go to bed before 7pm each evening and sleep straight through until morning. This lasted for about 4 or 5 months and I pretty much just played with Julia a little bit, worked and slept. Then I started to feel better.

We agreed that we wanted to know the sex of the baby and were excited for the first ultrasound. Emma didn't cooperate and we left not knowing if she was a girl or boy. I figured my OB would send me for another ultrasound so there was still another shot to find out before the delivery. The ultrasound showed an echogenic bowel - basically some blood in the bowels. My OB assured me it was likely nothing to worry about and sent me for a 2D ultrasound with a specialist. Everything appeared normal at this ultrasound an we left knowing that Emma was a girl (YEAH!) and that everything measured just fine. We were very relieved and happily anticipated Emma's entrance.

Emma came a couple of days late and weighted in at 7lbs. 3oz.! The birth was - thankfully! - uneventful and our darling Emma was just perfect. We were anxious to get home. Before we left we learned that she failed her newborn hearing screening in her right ear. She passed her left ear. Everyone told us not to worry - this was common and is usually due to some excess fluid in the ear from the birth process and we should follow-up with another hearing test in about a month. I wasn't too worried since I figured at worst, she would still have one good ear to hear. We went home and started to settle into life as a family of four.

We followed-up with the hearing test and another test and another test and eventually realized that Emma is deaf. That really rocked our world! We found this out the day before Thanksgiving. I'll never forget that day. We had to follow-up the Monday after Thanksgiving for some confirmation tests but we were not expecting the diagnosis to change. I cried a lot that Thanksgiving season. Emma was the first deaf person in my life. I kept thinking when we aren't in a room she must feel so lonely since she can't hear us in the house. I held her and rocked her and didn't want to talk to anyone. In a couple of days I was ready to search the internet for options. I did a lot of research on cochlear implants and was excited about the technology. Then we went off to Orlando, FL for a vacation that was planned before Emma was born. I didn't feel like going, but it really was the best thing that could have happened. By the end of the vacation we had accepted that Emma was deaf and were looking forward to getting the cochlear implant (CI) process started.

When looking into CIs, I found that quite a few of the children had multiple disabilities. I wondered how those parents were handling that and thought I should stop worrying so much about Emma being deaf and thank God that she was only deaf. Everyone thought that Emma was deaf due to a genetic mutation (connexin 26) since she presented herself so well. She did have some reflux and back arching, but that didn't cause much concern. We met with the geneticist to determine the cause of Emma's deafness and he prescribed all the blood work to test for genetic reasons and then "threw in" the urine test for a virus since she did pass one ear in newborn screening and lost the hearing very quickly.

We had an MRI scheduled in early December to confirm that Emma had an intact auditory nerve - a requirment for a CI. The MRI showed an intact auditory nerve and also some concerning stuff with her brain. That REALLY threw me into a tailspin. What did that mean?

Our pediatrician called a neurologist and sent us over to see her the next week. We had found that it takes A LONG time to schedule specialists visits and that the parents usually schedule them, so when the pedi's office called to let me know of our apt. I started to know something was definitely not right. We saw the neurologist on Dec. 31 (Emma was almost 3 months old) and she told us that Emma tested positive for CMV and prepared us a bit that Emma might also have cerebral palsy, but she figured it would be a mild case. Huh? Excuse me? What happened to genetically deafened???? And what the heck is CMV? Cytomegalovirus? Can you spell that for me please? And that is how we first heard of CMV.

Nutrition

I think back to when Julia was little and how effortless she made it seem to progress through the typical baby stages - cooing, holding head up, laughing, sitting, eating, crawling backwards, cruising, crawling forwards, walking, eating table foods, drinking from a cup. I now know how complicated each of these actions are and think babies are brilliant since they usually acquire these skills in the span of a year or 18 months.

Children with delayed motor skills go through the learning process much slower and often with a team of people directing, prodding and moving their bodies for them all in the effort to train the brain so they can eventually move on their own. For us this means an endless group of people coming in and out of our house, a daily schedule that is set around therapy schedules, and endless worry about each milestone not achieved. It can get very tiring, but it also makes the celebration of each milestone achieved that much sweeter. It makes you want to dance around the room laughing and twirling the girls. It makes you want to bake a cake and........hmm, thinking of cake brings me back to the original topic of this entry - feeding!

The motherly instinct to feed your children is so basic and strong that it is pretty much universal. And when you have a child with motor delays feeding is often a daunting challenge. We are lucky that Emma does not have many challenges with sucking - she was able to nurse fine and transitioned to a bottle seamlessly. The fact that Emma loves to take a bottle has been a HUGE advantage in keeping her nourished. When Emma is in the never-ending teething process, unable to, or just plain doesn't want to eat it's nice to know that she will always suck down 6-8 ounces of fluid. It nice to know, but in my heart what I really want to do is feed my child. I want to not have to worry about weight checks and I want to eliminate the words "failure to thrive" from my child's medical files.

And so the focus of some of the therapy and specialist appointments took shifted to teaching Emma to eat. At this point I had already had enough people telling me what to do and how often to do it and I wasn't looking forward to the input on the feeding. But, I sucked it up hoping that Emma would benefit from the expert advice and that meal time would result in less frustration and fewer tears shed by me or Emma or both of us.

We added oral exercises with chewy toys to our daily list of activities with Emma. She still has oral aversion some days but other days she lets them in her mouth so that is progress. I shifted my focus from eating table foods to making meals that make appetizing purees. And, for good measure, I replaced many of our standard foods with organic foods. Emma now has days when it's a pleasure to feed her (i.e., opens her mouth for the food and finishes a meal in a 30 min. block of time) and days where she has her mouth clamped closed like a pit bull. It seems to me that just when I'm about to give up on Emma eating she comes through with a couple of good eating day. It's almost as if that she likes to take me to the brink of breaking only to pull me back to sanity with a smile, laugh and a ravenous appetite.

I would say that we are now in a feeding routine that works for us. I've accepted that Emma will willingly eat food about 3-4 days/ week and the other days I will have to hide it in her bottle. I've also accepted that she will be eating pureed and mashed foods for a while before she moves to more solid foods. She is adept at drinking out of a training cup and is even getting close to holding it herself. This would be a HUGE achievement in my book since it would give Emma a lot more control and provide us with a bit more time not spent on direct feeding (currently it takes about 3 hours/day). We'll find out in October if Emma is on the height/weight curve they want, but to my eyes and arms Emma definitely feels like she is growing at a healthy rate.

Another change we made recently is changing Emma's nutritionist to Kelly Dorfman mainly for her experience in using diet to address dyspraxia and language delays in children. Since Emma's oral motor skills are delayed and she has some traits that are similar to dyspraxia we felt Kelly was a good fit for Emma's team. Our initial consultation focus was around changing Emma's diet to address her acid reflux and constipation. We also talked about supplements available to promote brain development and better motor skill control for Emma. The outcome of our consultation is a change in Emma's liquid intake from a mostly milk/formula/Pediasure base to a mixture of almond or soy milk, unsweetened coconut milk and a special formula powder. We also are introducing DHA and a liquid vitamin specifically developed for brain injured children to help Emma achieve our goal of less reflux and constipation coupled with good brain development. We are phasing the changes into her diet and have a follow-up appointment with Kelly at the end of September to review Emma's progress.

Well, there you have it. We're doing a lot to make sure that Emma has the best foundation possible - therapeutically and nutritionally - to help her heal and we're learning a lot along the way. As always we are happy to make course corrections as necessary, but for now I think we are on the right path.

Dentist Visit

Julia had her first dental visit last week. I called for an appointment and they put her in for the next day thanks to a cancellation. This gave me pretty much no time to prepare her for the visit. So, I was pleasantly surprised to find out they talked about yellow teeth and had a demonstration on brushing the yellow teeth to get them white at her school the same day I made her appointment. Talk about timing!

When I broke the news to Julia that she was going to the dentist, she made her voice sound so small and cute and said "I don't want to go to the dentist." I started talking up the dentist and told her how much fun it is and that she would get a great gift after her visit - REALLY hoping they still did the child jewelry thing since I forgot to check when I made the visit. This still didn't win her over and I let the subject drop because I couldn't help but laugh at all the protests she put up about getting her teeth checked.

After making a big deal about visiting the dentist with everyone we came in contact with, Julia came willingly to the dentist and she did great! The dentist was new to me since we had to switch based on the new health plan. Julia (and me!) was happy to see tvs in both the waiting room and treatment room so Julia watched cartoons while waiting. She wasn't sure about getting her teeth x-rayed, but she did pose for the photo and the person taking the photo was thrilled with this. Apparently, not many children Julia's age will let them take the photo, but then not too many have Julia's temperament, either. She let the dentist count her teeth and she commented on how well they looked and told us both to keep up the good work (I appreciated the kudos!). Then, she had her teeth cleaned with bubble gum flavor paste- of course! - flossed, and a fluoride treatment applied before she got to pick out her new toothbrush and toothpaste. Julia loved the way her teeth felt and flashed her pearly whites at everyone who asked about her visit. When it was all over she got two cool gifts - a dinosaur ring and a weave bracelet.

Waiting for the dentist

After Teeth Cleaning

Afterwards we went out for breakfast at a local bagel shop. Julia loved all the special attention she received and I was pleased that there wasn't anything wrong with her teeth to make the experience unpleasant. Since her visit, Julia has been asking to brush her teeth more which is a welcome change from her giving me a hard time about brushing. She loves her new toothpaste and brush and is even looking forward to her next visit in six months.

Thanks to the entire dental staff for a successful visit!

Sometimes you get a bone

I've been reading this blog and there was a recent post about getting "thrown a bone."  Well, today I think God threw me one!  Emma sees so many doctors and I don't mind going to the many appointments but one visit always haunts me - the Pediatric Neurologist.  

I'm usually a pretty rational person, but visits to the neurologist wreak havoc on my stomach for weeks before the appointment.  I dread our visits there.  I dread the news that we always seem to receive at this office.  My heart breaks at all the children and families in the waiting room with us.  What usually happens is we walk in with our baby who we think is making fantastic progress and feel like all her hard work goes generally unnoticed.  I know Emma is developmentally delayed - I haven't been hiding under a rock somewhere.  I have friends with children close in age to Emma and see the delay whenever we are together.  But, can't we celebrate all the progress she has made?  

I'm happy to report that at our appointment today I think we finally were thrown a bone!  I should have known this visit would be different than the others.  The sun was out (it rained for all our other appointments).  I found a front row parking spot for me and Emma.  Chris met us in the waiting area where he already checked Emma in and they took us right back once we arrived even though we were about 10 minutes early.  There wasn't anyone in the waiting area in either our way in to see the doctor or the way out.  AND, did I actually hear that the doctor say she felt Emma made a lot of progress since our last visit?  Did she actually say that Emma should start to really make more progress now that she was so much more engaged in everything?  Well, finally the doctor is coming around to my way of thinking.......

Here is a photo of Emma before our visit sporting a ponytail and sitting in the chair - YEAH!