The Good, The Bad, and The Ugly

The Good - Clare not only walks now, she walks holding onto items (her favorite being to bring me countless measuring cups from one of the kitchen drawers - I never realized I had so many measuring cups), she can pick stuff off the floor and stand back up, and is working on standing up by herself from the middle of the floor. She has mastered pulling up, so now she needs a little more work on her balance to get up off the floor. I am awestruck at what she has accomplished in about a week. Her PT was here yesterday for Clare's feeding team follow-up and then here again today for her session. She noticed more improvement just over one day. We keep using the phrase that something just clicked with Clare.

The Bad - Of course, with more walking comes more tumbles. Clare is not as afraid to fall anymore, but she does get banged up quite a bit. She concentrates so hard on walking that she does not always see things lying in her way. Little items can trip her up as can the thresholds from room to room or simply going from the hardwood floor to the rug. One of her PT exercises is to get Clare to take more notice of her surroundings and potential obstacles so she does not fall so much!

The Ugly - And with the falls come countless bruises and cuts. Currently, Clare is sporting a cut lip, scraped chin, huge bruises on her elbows and knees, and smaller bruises scattered in different place. We had her cardiology exam and echo this morning, and I showed her cardiologist all the bruises and explained that everytime Clare gets cut is a bloody nightmare (literally) because of the Plavix, Clare's blood thinner. When Clare was first put on Plavix (at five months old), it was to prevent blood clots in her stents. She was not put on aspirin (which is much more common) because Shawn has a severe aspirin allergy. We didn't need that complication if Clare was found to have one as well. Clare's cardiologist feels Clare still needs a blood thinner, but is willing to explore other options. So six weeks after Clare's next cath, we are going to try a low dose of aspirin. I am very nervous about this, but if Clare has no reaction and can tolerate aspirin, she will do better with the bleeding out issue and won't look like a battered child every time she has a fall.

It has been a busy week for us. As I said, the feeding team came out yesterday for their follow-up. I dreaded this visit because Clare has made very little progress since they were here six months ago. In some areas, she has gone backwards with her eating. Without going into all the mundane details, what the swallow specialist sees is that there is some serious sensory processing going on when Clare eats. Clare is so fine-tuned to everything she puts in her mouth that she can find the tiniest piece of carrot in vegetable cream cheese. So many oral exercises are being added to Clare's OT regimen - we have silly straws, horns, kazoos, bubbles, dippers, mesh feeders. Plus we are going to start serving at every meal three things that are different tastes, temperatures, and textures (the three T's) and encourage Clare to alternate between the three. Since Clare flatly refuses to eat fruits or vegetables, we also have to become pros at hiding them so she gets the nutrients (since our smart girl also refuses to drink Pediasure, Carnation, etc. and prefers the simple vitamins over a more complex one with all the vitamins and minerals). Clare will notice one carrot shred in her pasta - however, Shawn successfully pureed a carrot so well and mixed it into Clare's mac & cheese, that she had no clue. The color was slightly different but the texture was identical, which is key, or Clare will reject it. This morning, I pureed two banana slices into her beloved milk. The taste was only slightly altered, but Clare did not seem to notice. One carrot and two slices of banana - yea! It's a small accomplishment. (I put some of this boring info in for my fellow WS-mommies in case you are facing similar issues.)

Despite all our struggles and frustrations with eating, Clare is growing. Since her last cardiology visit two months ago, Clare has gained one pound and grown one inch (very good for Clare!). She is also finally growing out of her 12-18 month clothing and jumped two shoes sizes! We are excited about all the growing she is doing, although we have to have her AFO's adjusted because she is growing out of them as well.

So now all the medical appointments will slow down for a couple weeks until Clare heads back into the hospital next month. Her echo today showed that she needs more dilations done to her pulmonary arteries. The pressures on the right side of a normal heart are usually 25% compared to the pressures on the left side. Clare's right-sided pressures are 200% of those on the left. The right side of her heart is bulging into the left, it is working so hard. Other than minor fatigue (which we think is due in large part to her increased activity) and having a hard time with the heat (the heat increases her cardiac output), Clare herself is doing well, so we will hang in there until mid-September.