Bilateral AFOs

On February 5th, Emma was almost standing under her own power during physical therapy (PT). Because of her progress, her therapist recommended Bilateral Ankle Foot Orthosis (AFOs) to help her with the pronation (diagram below) she experiences when she tries to bear weight on her feet. So when we went to her pediatrician appointment on her birthday two days later, I discussed the braces with her doctor. She agreed with Emma's PT, and wrote a prescription for them.



We went to Hanger Prosthetics & Orthotics in Plano for her assessment on February 11th. The technician that did the initial appointment was impressed by the strength Emma displayed in her legs, but agreed that her ankles were weak and the braces would help. They would provide her with much needed support, allowing her ankles to develop strength while keeping her feet in place. He took all of her measurements, which was a fun ordeal as she is not a fan of being still while anyone is holding any of her extremities. I was impressed how the technician was able to get them so quickly given how much Emma was wiggling. They gave us a two week approximation for the custom braces to be in, so we left eager to return.

In addition to getting Emma the AFOs she needs, I have also been working with Emma's therapists and pediatrician to get her on the waiting list for SpiritHorse Therapeutic Center in Corinth. I mailed in her completed application on February 13th and hope that she will get in soon. They have a long waiting list, but their services are worth the wait. The therapeutic horseback riding they provide to around 450 children and adults is at no cost to their families. There are sixty-four children that have spoken their first words, forty-eight have taken their first steps, and even thirty-eight who sat up for the first time at this center with the help of the therapy they provide. My hope is that Emma will make the "first step" number increase by one more.

I received a call from Hanger on February 19th stating the braces were in so we scheduled an appointment for her fitting on the 21st. It went well and Emma left wearing her new AFOs (or "boots" as we're calling them) and some slipper shoes we found at Target that her PT recommended. It was great to have them for her PT on the 22nd to see what her therapist thought and to talk with her about how to move forward working with Emma as she progresses with her new "boots." It was extremely beneficial since her PT will be moving at the end of February and Emma won't be getting therapy from her any longer.

Emma's left boot viewed from the inside. The plastic has the "comic strip" design on it.

Emma has adjusted well to her new "boots" and seems to be getting used to them fairly quickly. I'm always impressed and amazed at how tolerant she is of things. For a child that seemed so adverse to textures (and still is reluctant to touch new things as times), she is really becoming one curious little girl. I can't wait to see her exploring places on her own!

Happy 2nd Birthday, Cupcake!

It is hard to fathom that I have been a mother to this beautiful baby girl for more than seven hundred and thirty days; but since we celebrated her second birthday this past Thursday, it must be true. On the morning of her birthday, she saw her pediatrician for her wellness check. She weighed in at twenty-six pounds two ounces and measured thirty-five and a half inches long! While these measurements were great, there was one measurement that was even better. The circumference of her head reached the normal range and is on the curve! Her doctor and I both felt that she would be close to reaching the normal curve around this age based on her progress at her last wellness check six months ago, and she did. Considering where she started on the growth chart, this is a huge accomplishment for her. After all the normal checking gave her doctor no cause for concern, it was time for Emma to have her last vaccine until age four and a little blood taken from her heel. Before that appointment, she had never cried from any shot or blood draw. Thankfully, she continued to keep the nurses guilt free by only making a not-so-happy face. But, as always, she was quick to forgive and smiling when she left.

Now, we have to work on her saying "two" as well as holding up two fingers when asked "how old are you?" Not quite doing it yet, but she'll get there soon. I won't complain, as she has accomplished so much in the last six months. Just this past week on Tuesday, she was almost standing under her own power during physical therapy (PT). Thinking about having a mobile Emma is beyond exciting for me, but I'm sure eventually I will also be nervous as it will mean more baby proofing and some bumps and bruises. My goal for her this year was to be mobile in some way so she is definitely getting closer, and it is only February. Until then, my "mommy arms" will just get more toned.

Birthday girl dressed and ready to celebrate.

The evening of her birthday, she went out to dinner with my step-mom and me. She was the most adorable girl there in her little outfit. Now that she can sit in a high chair at a restaurant on her own, it is so much more clear that she really is getting to be a big girl. I couldn't believe she was almost three feet tall when they measured her at her pediatrician appointment, but when you stretch the little ball of legs out, that's what you get. After dinner, she was up a little later than usual as she stayed awake this year for the whole story I told her at bedtime. Just like last year on her birthday, I told her the full story of the day she was born (the parts I remember and the parts others have filled in for me). She seemed to enjoy it as we snuggled up in my mother's rocking chair that I have in her nursery. But, inevitably, the time came to put my baby girl to bed for the first time as a two year old.

Friday night was a busy night for us as well. We played with her birthday toys and made sure we had everything ready for the big party on Saturday afternoon. The party was going to be at her godmother's house just like last year; but, to make it easier for us, we decorated their house the weekend before so that was mostly done. I also opted not to bake Emma a giant cupcake as her main cake since that took several hours to bake and cool last year. Instead, although I still did some regular cupcakes (had to do that since her nickname is "cupcake"), her main cake was a small round double layer cake with an elephant on top. The theme this year was elephants, which seemed fitting since that is what her bedroom has everywhere. Her birthday outfit was clean and ready for her as were all her accessories. The rest would have to be done in the morning. Luckily, most everything was already at her godmother's house, so it was just a matter of packing up the cupcakes, her food and milk, and us.

On Saturday, I baked the cupcakes and then we packed up and headed over for the party after we had breakfast. We played and decorated until lunch. After she ate, it was nap time. While she slept, we put the finishing touches on everything and got it all ready for the guests to arrive. When guests started to arrive, my little munchkin was still asleep so I went and woke her up for her party. She wasn't too sure about the tutu she had on, but she seemed to like all of the attention. After most of the guests arrived and she had greeted them, she sat down on the floor and played with her toys that we brought over to show how strong she had become over the last year.

My precious baby girl in her birthday outfit.

Next, it was present time! Emma continued to sit on her own next to me while I opened her presents for her and showed her all the wonderful gifts people brought for her. She got some of the most adorable clothes as well as some great toys. She even got some gift cards for diapers which I was just as grateful for as the rest. After the gifts, it was time for cake. I helped Emma blow out the candles on her cake, and then she happily watched everyone else enjoy the cupcakes. She still wasn't a fan of cake yet, but we did try it again just to be sure. Maybe next year...

After the party was over and everyone was gone, I filled the back of my SUV with all of her delightful gifts and left over cupcakes. By the time we got home, it was dinner time for me and almost time to bathe her. After her dinner and some much needed snuggle time, I put her down for the night. I couldn't help being so proud of her for doing so well with such a busy day. Emma continues to show me she can make me smile and feel all warm and fuzzy inside no matter what else may be going on in our lives. I am so lucky to have her!

Signs of a Shunt Malfunction

Some of my friends and family have asked me questions about what to watch for when they are around Emma. Mostly, symptoms of shunt malfunctions are things that should be red flags no matter if the child has hydrochephalus or not. Once Emma does have her first malfunction, we will know her personal set of symptoms that she will experience for every subsequent malfunction. I continue to hope that it will be a long time before I find out what Emma's set will be; however, I know it is better to prepare for it then hide from it. I am trying to not only prepare myself, but educate and prepare my friends and family as well.

Emma has been lucky so far as she has not experienced a single issue with her shunt. This is not the norm as more than half of the shunts placed fail within two years. That statistic has been in the back of my mind since Emma was born. Other statistics show about 40,000 shunt-related surgeries are performed each year costing over $1 billion in the United States alone. These numbers are staggering when you take into account the limited knowledge most people have about hydrocephalus. This can make it a little more challenging to learn about the condition without the support of doctors and websites like Hydrocephalus Association (both of which I am grateful for).

As we approach her second birthday, I am doing my best to make sure I am prepared for when (not if) she does have her first shunt malfunction. I know it is coming and I know that time is extremely important when it does happen as mere hours can be there difference between a revision surgery and brain damage or death. Some of the symptoms of a malfunction, for a child that can not verbally communicate how they may feel differently, are very subjective. If you have spent enough time with Emma and know her personality as well as her normal eating and drinking habits, you are more likely to notice a change in them. Decreased appetite or lethargy are symptoms that are difficult to gauge as every child does have a normal change in these habits over time and even day to day. The same goes for a fever - it can be a symptom of a malfunction, but it can also be a sign of so many other things that it is hard to know if the fever should just be treated with Tylenol or a cause for concern.

Shunt malfunctions are most commonly caused by a partial or complete blockage of the shunt. An obstruction can occur in any part of the shunt, but in children it is most common in the part that is in the brain. You also have to consider the possibility that parts of the shunt can become disengaged or broken due to wear and growth. No matter the cause, there are symptoms to watch for. If the child is young enough to still have a soft spot (or in Emma's case, still does due to her increased head size before the shunt was placed), then you can watch that area. If it becomes full and tense, the likelihood is that there is an increase in pressure from fluid that is causing it. Once the soft spots are closed on children, this sign is no longer valid. Other physical signs on the head to watch for are swelling or redness of the skin near the shunt as well as bulging veins. Other symptoms include headaches, vomiting, irritability, and tiredness.

To correct a shunt malfunction, revision surgery will be required (and possibly more than one). After any shunt-related surgery, there are risks for shunt infections. However, they usually happen within six months post-op. Other complications to watch for include the shunt system draining the cerebrospinal fluid (CSF) at the wrong rate. Not draining enough and draining too much are both cause for concern.

In an effort to monitor her shunts' functionality, Emma has rapid MRIs done on a routine basis. Her next one will be on March 7th so we are keeping our fingers crossed for good news. With all of her development, I couldn't be more proud of how far she has come already. So until her birthday, we'll continue to play with her new favorite toy: BALL!