Wednesday, October 16, 2013

Carter Alan Wall

I've held off writing this post for several months for many reasons. Part of me wasn't sure where to begin. I want to share our story simply because I hope it will help someone else who may be going through the same situation as we are and can give them some comfort. As we navigated our way through the past few months I was always hesitant to tell people what we were going through because part of me kept waiting on that appointment where we would be told everything was just fine and then there would be no story to tell. So much happened over the course of just a few months that it was exhausting to even think about catching people up individually, so here is our story.

When we took Carter to his nine month appointment we were asked to fill out an Ages & Stages Nine Month Questionnaire. It was a series of questions about activities that babies may do at nine months. It stated that our baby may have already done some of the activities described and there may be some that our baby has not begun doing. As I got about midway through the questionnaire I started to get worried. I realized that I was answering "not yet" to the majority of the questions. I asked Chris, "do they really think he should be doing all of these things at nine months?" The questionnaire covered communication, gross motor, fine motor, problem solving and personal-social skills. After our pediatrician came in and spoke with us at length we were told that they recommended Carter be evaluated through the P.I.E. (Parent Infant Education) program in Arlington County. She said that Carter may have enough significant delays that would qualify him for speech and/or physical therapy. Seriously? I remember the end of the appointment being a blur. I could hardly think or see straight. Was she really telling me that something was wrong with our precious angel? How could this possibly be? I was so upset and mad that I just felt sick.Chris and I weren't sure what to think of her recommendation. Part of us wanted to tell her that she was wrong and we knew Carter was OK but then the other part of us started to worry.

The P.I.E. program is provided through the county and it's a developmental assessment where early intervention service providers meet with you and your child to learn about your child's developmental strengths and needs. They help you devise a plan for any early intervention they may deem helpful for your child. We were first assigned a case worker who came to the house to meet with us and ask us general questions about my pregnancy, Carter's birth and the first nine months of Carter's life. The second visit was with our case worker, a physical therapist and a speech therapist. They watched Carter play with toys, communicate with others and use his muscles to move and play. Following our play time they proceeded to ask me a series of questions. Where do I want Carter to be in a year? What would I ideally like him to be doing at this time? I was so overwhelmed I didn't know what to say. All I wanted to know was whether or not they thought therapies were necessary. Why were they asking me all these questions? Aren't they the ones who are supposed to tell me what activities he should be doing at this time and where Carter should be in a year? Ugh, it stresses me out to think back to it. They wanted this to be a team effort yet I felt so overwhelmed and was looking for more guidance than anything else.

During the last five minutes of our appointment I was told that Carter did qualify for speech and physical therapy and they recommended both therapies every other week. Part of me was still in shock that they thought he needed help. I guess that was denial on my part. When someone tells you that something in wrong with your loved one you don't want to believe it. I honestly had no idea that the second appointment would be as lengthy as it was nor did I expect them to say that Carter qualified for speech and physical therapy. Chris wasn't able to be home for the appointment so of course he had a lot of questions and concerns afterwards when I told him the outcome. My recommendation is to make sure both parents participate in these appointments should you have to go through the P.I.E. program evaluation. Everyone we met with was extremely nice and considerate but you need both parents present. When I think back to our situation we strongly believed that Carter was fine and wasn't going to need therapies so the fact that we both couldn't be there didn't seem like a big deal at the time. I guess the lesson learned is that we should have gone into the evaluation with more of an open mind and been prepared for the two different outcomes.

Following Carter's assessment and diagnosis we were assigned a speech therapist, Beulah, and physical therapist, Colleen. They having been coming to our house every other week since Carter was around ten months old. Beulah comes at 8:00a.m. on Mondays and Colleen comes the following Tuesday at 8:00a.m. Yes, they actually come to our house! I guess that's the nice thing about qualifying for therapies through the county. They will come to your house or if you child is in daycare they will meet you there. It's important to do the therapy in the child's environment so he can learn skills to use on a daily basis.

We were a little skeptical of speech therapy at first because all Beulah really does is sit on the floor and play with Carter. She works on over emphasizing letters and words. I read online, before we got started, about creating a sound bag. I placed several toys in a bag that began with the same letter. We decided to start with the letter B. I put a boat, ball, book, and bird in his bag and we constantly worked on emphasizing the letter B and playing with those particular toys. We were pleased that just two weeks later he started making the B sound. We sing a lot of songs and read a lot of books during speech therapy too. At the end of each session Beulah will give us a sheet of recommended activities we work with Carter on for the following two weeks. Beulah told us at the beginning of our therapy sessions that it's very common for children with physical delays to have speech delays too. Typically children become more vocal once they mobilize. We noticed a huge improvement in Carter's overall speech and sounds once he started crawling. He needed to work on his core strength in order to verbalize sounds so you can easily see how these two therapies work together.

When Colleen comes to see us she gives Carter a full blown work-out! The little guy is absolutely exhausted by the time she leaves but it's great to see him working so hard. Colleen just recently finished graduate school so Carter is one of her first patients. She's young and reminds me a lot of myself at her age so Carter responds to her really well. When Colleen first started coming Carter was just starting to sit up securely. We have done exercises varying from baby sit-ups, to balancing on a big bouncy ball, to wheelbarrow walks, and recently we were given the task of mastering the stairs! Funny huh? Most people try everything they can to keep their kid away from the stairs and we're encouraging Carter to crawl up them.

At Carter's nine month appointment were also told that he has low muscle tone. There really isn't much you can do to change his tone, other than work to strengthen his muscles. Carter was breech and didn't really move around a lot in the womb. Some of our personal research has suggested that being breech can cause low muscle tone and other studies have shown that some babies are breech because they have low muscle tone. I guess we'll never know, but Carter was basically in a V shape throughout my pregnancy. When he was first born, and for several months afterwards, he kept his little legs pulled up like a frog. We also began to notice as he got older, that when sitting up the soles of Carter's feet were turned so much that they faced the sky. Once he had the strength to stand up we noticed that he stands on the inside of his feet. He won't stand flat footed for the life of him. After we brought this to Colleen's attention she decided to order him orthotics to wear in his shoes. Not only will this help correct his foot but our hope was that it would give him more confidence to stand and walk.

Carter's legs stayed like this for several months.
Nine month check-up. Can he get any cuter?!
Notice how Carter's feet turn up.

After two months of these therapies under our belt we approached Carter's 12 month check-up. We weren't worried going into this appointment at all. Actually we were very pleased with Carter's advancements and were happy to share them with his pediatrician. On a side note, we don't necessarily see the same doctor at every appointment. That is the one down side to our pediatrician. It's a large practice; therefore, to get an appointment with the doctor you like you have to schedule it months in advance. Not convenient at all. We had seen the same doctor for all of Carter's appointments up until his nine month appointment, but we were fortunately going back to our original doctor for his 12 month appointment. We were anxious to see what she had to say about Carter and we really hoped that she would just shrug off the worries before and tell us that Carter was right where he needed to be. Well unfortunately that wasn't the case. Things started to go down hill when she told us that she was concerned because Carter's head circumference hadn't changed since his nine month appointment. I didn't exactly share her concern because Carter has always been in the highest percentile for his head circumference so maybe his body was now catching up to his head size. Secondly, she was concerned that his soft spot hadn't closed even though she told us it can take up to 18 months to do so. Thirdly, she was worried about his feet. Fourthly, she was worried that he wasn't crawling and walking even though we told her we had seen significant improvements since we started the therapies. Before we knew it she was throwing out words like neurosurgeon, geneticist, diseases, disorders, etc. Once again we were caught completely off guard. We expected her to be pleased with Carter's progress not throw out additional concerns! Long story short, she was concerned that there may be an underlying issue that could tie all of these things together. She referred us to a geneticist that she said could take us months to get into (very encouraging) and if we couldn't get in with a geneticist then we at least needed to see a neurosurgeon about Carter's head. Talk about sucking the life out of you.

Seriously? We had already gone through enough and were happy with how far we had come with Carter and now we're facing this? Like I mentioned earlier, part of us wanted to tell her she that she was crazy and walk the other way but at the same time she had planted a seed of doubt in our minds so how could we not proceed? Fortunately I was able to get an appointment with one of the geneticists she recommended. The first one was booked through the end of the year (I called in June); however, the second doctor happened to have an opening two weeks later. We accepted the appointment and took Carter to see a geneticist at Children's National Medical Center. At least I knew we were going to one of the top children's facilities in the country but I was worried sick. The hospital was extremely nice but it was hard not to have a knot in your stomach when you saw all the precious little kids there, some for cancer treatment and others for various other medical concerns. If you have a child then you know that deep almost painful love you have for your child and how you would do anything in this world for them. As we checked in and made our way to the genetics department I saw the faces of so many strong parents strolling the hallways with their little angels.

At our appointment we first met with a genetic counselor. She asked each of us our family history, asked me about my pregnancy and had us bring her up to speed on Carter. Then the geneticist came in and following a round of questions he did Carter's physical exam. He looked and his hands, stomach, back, head, feet and legs. He said from a physical standpoint there was absolutely nothing that concerned him. However, Carter did have enough developmental delays that he recommended genetic testing. He informed us that when they see children with these basic delays they recommend three different tests as a starting point. The first test was for muscular dystrophy and any other  underlining muscle disorders. Since Carter has low muscle tone they felt it was best to rule this out. The second test was for a rare disease called Fragile X, an inherited type of cognitive impairment. I still haven't researched this disorder because the doctor told us that it is a very bad diagnosis. There was nothing that made the doctor think that Carter had the disease; however, he said it's common that symptoms don't present themselves until children get older. By this point my heart was racing. And last but not least, the third test was a chromosomal micro-array analysis, which is a DNA-based method of genetic analysis that can identify chromosome abnormalities. It's a very complicated process and if something should come back abnormal then that would potentially open Chris and I up for testing. They said that this piece to the puzzle is important because should there be irregularities there is a chance we could pass them along to additional children should we have them. Chris and I certainly want more kids so it was important to us to make sure that everything was normal.

Since we were already at the hospital they told us they could go ahead and take Carter's blood so we wouldn't have to come back. You would think they would take a child's blood differently from an adult but that certainly wasn't the case. They had me sit in the chair like you would at your doctor's office and place Carter in my lap. I had to hold his little arm up on the arm rest and hold it in place while they tied the tourniquet around his arm. Talk about tears! Not only was Carter crying but so was I. Poor little guy was such a trooper. He had no idea what was going on and how worried sick Chris and I were but yet there he sat through all of this with a big smile on his face. It will get you every time!

As you can imagine all of this was hard to process. There were a lot of technical terms thrown at us so there was a lot to think about. Of course the process couldn't be easy so the first hurdle was to get our insurance to approve the testing. Some insurance companies don't cover the testing, some cover portions of it and some cover all of it. The three tests run around $4,000. After waiting about two weeks we heard from our insurance and were relieved to find out that they would cover the majority of the costs. However, Chris and I had already decided that we were going to go through with the tests regardless. As I mentioned before, these doctors planted multiple seeds of doubt in our mind and for our own sanity we knew we needed to get these tests done so we could move on with our lives. Heaven forbid they come back abnormal, then we were prepared to put our game faces on and fight it, but we also prayed that everything would be OK so that we could move on.

Since we knew it was going to take a month before we heard back about Carter's tests we decided to try and not give it much thought. August was filled with fun trips and we decided not to let anything keep us from enjoying our time with family and friends. Our worries were continuously put at ease over the following few weeks with Carter's progress. That was the one thing that always gave us hope in this situation. Maybe Carter wasn't where most babies his age were developmentally but we continued to see progress on a daily basis. Of course I would have been concerned had we not seen improvements, especially once we started his therapies, but we were! What's wrong if a child takes a little longer to develop? Nowadays all these percentiles are thrown at you and it causes you to worry about whether or not your child is below average, average or above average.

Chris and I have gone through a range of emotions. Part of us has been very angry with our pediatrician and we've wondered if all of these tests were really necessary. Were they just covering themselves in this situation? But then again, they're the experts so we wanted to trust them and if something was wrong then we were getting a jump start on intervention. You don't know what to think or what to do. Regardless, you put your faith in God and hope and pray that everything will be OK.

We ended up getting the test results back at three separate times and thankfully everything came back normal!!! Hallelujah! They told us that no further testing is recommended at this time and that they'd like to see Carter in six months to make sure he's still progressing. While we tried our best to remain confident through all of this, it was hard. When someone plants that seed of doubt you can't help but worry, or at least I can't. I unfortunately will let my mind run to the worst case scenario but I knew whatever we were faced with we would handle it. Team Wall is strong and even more so now that Carter has joined! There isn't anything in this entire world that we wouldn't do for him. Thankfully we don't have to face that fight right now. Carter is our precious little angel and while he may not be walking right now like most 15 month old kids, he will!

Carter loves to be around other children. He just lights up when he sees the kids outside and he can't wait to get out there and be with them. It can be hard at times to see all the other children running around and you can see in Carter's eyes that he wants to be right there with them. They'll always run up to Carter and say hi and play with him for a few minutes, but as all kids, then they're off to play with something else. I wish he could chase after them but I just have to remember to be patient. Carter will do things on his own timetable and there is nothing wrong with that. We're blessed to have a wonderful nanny who loves him dearly and works with him throughout the day. We're also blessed to have wonderful family and friends who have prayed for each of us through all of this. Their love and support means the world to us.
Carter with his cousins, Witt and Walker.
Carter is doing great. He is crawling everywhere these days and getting into all kinds of mischief. He can crawl the stairs on his own and cruise around the furniture, but we have a ways to go before he will walk. His left leg is considerably weaker than his right so we're working on strengthening it. We're really going to have to work hard on his leg strength and balance before he will get to walking but we'll eventually get there. He waves and says "bye, bye", and loves to say da-da, ball, bu-bu (for bubbles) and recently started saying mama (but has given that word up this past week, ha)! At Carter's 15 month appointment our pediatrician (the one who recommended the genetic testing) was very pleased with his progress. He gained two pounds, grew two and a half inches and his head grew by half an inch. She was happy that the testing came back normal and that he was progressing with his therapies. When I told her that he still wasn't walking she brushed it off like it wasn't a big deal at all. Funny how circumstances change in just three months.

All of this has certainly been a learning process. Part of me wants to say that it's important to stick with your intuition and gut. You know if there is something wrong with your child. This doesn't mean that you should discredit your doctors but maybe consider getting a second opinion. After our experience I feel like our pediatrician's office doesn't know what to do if your child isn't text book. I think they're so worried about missing something or being at fault that they refer you to to a specialist. Maybe that's the right thing to do in certain situations. I don't know. I guess I let my fear turn into denial to a certain extent but in the end I guess it never hurts to rule things out. Maybe a wait and see approach is best for your situation. It's hard to know what to do but if you're faced with a similar situation go with your gut, get a second opinion and have faith that everything will work out the way it's supposed to.

So that's our story for now. Maybe it will answer some people's questions when they wonder why Carter isn't walking. Hopefully it will ease someone else's fears if their child has developmental delays. But most importantly we want to thank everyone who has been there for all three of us over the past seven months. It has been an emotional roller coaster but we made it through with everyone's love and support.


Erin, Chris & Carter

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