Fortunately for S, the hospital stays dramatically decreased after her one major complication. We did have follow-up after follow-up, but no more week-long stays at the hospital. Unfortunately, even just a doctor visit broke my heart. She was so afraid of people that she screamed anytime someone touched her. She was so tired of being poked, prodded, examined, moved, looked at. And I couldn't blame her. She had been through so much. Once released from the hospital, we had a couple of appointments booked. She had her well-baby nine month check-up with Dr. P on March 17. He was pleased with how things were going, and how different she looked in such a small period of time. She was tolerating more, which was a blessing to see. Two days later, we had a follow-up with Dr. M, who confirmed that still no infection had been found in her cultures, and that we were "all clear". He had her head measured, and was satisfied that it wasn't getting any bigger at this point. However, because she'd had some complications, he wanted to see her again in a month, before spacing out her appointments.
S continued to grow and thrive. Things have gotten a little hazy at this point, because I didn't keep an accurate record. We were just so happy that the worst was over, so we were taking everything in, but totally forgetting to document things. S saw Dr. M again on April 16th, with no changes, and then had her follow-up MRI on May 3rd, to make sure that the ventricles were shrinking and that her shunt setting was correct. As usual, watching my baby go through sedation was incredibly hard, but she came through it like a champ. She nursed shortly after coming out of it, and we were released within an hour after that. We saw Dr. M on May 12 to discuss the MRI results - the ventricles had shrunk, the shunt was doing its thing, all was well. What a relief. From here, we were able to space out the appointments more.
At some point in between these appointments, we were also seeing PT/OT for S's physical delays. Because of the pressure on her brain, S had not been comfortable with tummy time, and had not learned to crawl. At her first appointment, S was already eight and a half months old, and was re-learning how to sit unassisted. She didn't have the automatic reflex to catch herself when she leaned too far to one side, so she fell over a lot. At each appointment, we were given a sheet with different exercises to help strengthen her core (tummy), but I had a hard time following through, because she would fight me every step of the way. Luckily, S always found her own way to do something that would exercise her the way she needed to be exercised.
S turned one in June. We had a family birthday party at home, which would have been great, except that it turned into a hot, sticky, rainy day, and we were all trapped inside. We did still manage to barbeque at least. S was still afraid of people and tried to follow me everywhere, but still not being very mobile, I wound up carrying her around a lot. I made a spiced pumpkin cake with cream cheese frosting. I had a lot of strange looks for the type of cake I made, but everyone was pleasantly surprised at how delicious it was.
We celebrated Father's Day at a carnival, just walking around, playing a couple of games and checking out the kiddie activities like the petting zoo, then went to my mother's for a steak dinner.
In August, S had her one year well-baby check-up. She was 20lbs 13oz and 29.5 inches long. Still a petite little thing. She had started scooting around the floor on her bum as a means of transportation, and was trying to stand unassisted. She had started turning the lower half of her body into crawling position, and would sometimes rock on all fours, but had yet to attempt moving in that position.
On October 14th, S took her first unassisted steps, after months of cruising. She was able to do short stints, but didn't make her way across the living room until November 7th. She was almost 17 months old. Even after all this time and practice, she still didn't know how to crawl.
Christmas was just like any other Christmas. It was a very happy time for all of us. S was so happy, was mobile, and was starting to get better around other people. She wouldn't let them hold her, but they were allowed to look at and talk to her.
I don't know when it happened, but probably somewhere in January or February, S learned how to crawl. Because of her steady progression and growth, she was discharged by PT/OT. In February, we had another MRI done, this time through a testing program where she wouldn't be sedated, because the procedure would only take about 5 minutes, instead of the usual 15-20 minutes. The first attempt failed, and the techs told me they thought she would need to be sedated. They wouldn't try to put her in, because they insisted she was moving around way too much, even though I told them she would stop moving once the machine started, because she'd be more focused on the noise than fighting the straps. They told me to pick her up, and that they didn't think we could do it without sedation. I got really upset. This visit had already been a big ordeal, but then they wanted me to take her home and come back to do it all over again? Nope. Uh uh. No way. We discussed options for a few minutes, and they mentioned that with smaller babies, they would let the mother nurse the baby, then hopefully the baby would fall asleep and they could do the procedure. I was still nursing my almost 20 month old daughter at the time, so I asked if I could try that. Even if she didn't fall asleep, it would help calm her down. So I nursed her for about 10 minutes, then changed her diaper. While changing her, one of the nurses came and said we were going to try again, and that the tech didn't see there being a problem getting it done the second time, even if she fought it. I asked why the change, and she said they got the head tech (or whatever they call him) and he was positive he could take the pictures that needed to be taken. We took some extra time getting her strapped in snugly, so she couldn't put her hands by her face. She struggled a little bit, but wasn't crying or screaming. And when they put her in the machine, they had a mirror set up so she could see me even while in there. As soon as the machine started making noise, she became silent. In the 5 minutes she was in the machine, she even almost fell asleep! Of course as soon as she came out, and we started unstrapping her, she became fussy and started whining until I was finally able to pick her up. BUT, it was done. Like I told them it would be. I don't understand why these people don't listen to the parents, the adults who know their kids.
Our appointment with Dr. M followed about 2-3 weeks later, and again we were told that her ventricles had gotten smaller and that her head circumference was remaining the same. All good news. Now our appointments are being spaced out to once a year, and no MRI for about 2-3 years, unless complications or concerns arise. It was at the last appointment that I finally thought to ask some basic questions. Can my child hang upside down? Yes. Will it cause the CSF to back up into her shunt? No. Can she play contact sports or do aerobics, gymnastics, etc? Yes. Dr. M believes that there is no need to restrict their physical activities. The shunt is securely in place, and apparently it is pretty hard to do damage that would cause it to stop working or need to be replaced. He said there is no reason for her to be restricted, and that she should do whatever she wants to do.
Some days my heart breaks. I rub her head, and I feel the lump where her shunt is, and I almost shudder in pain. She barely knows it's there most days, and I find that there are days that I don't think about her "condition". I know that hydrocephalus, at least for my daughter, isn't nearly as scary as I thought it was. It's not a death sentence. She will live a long and healthy life. And while she is still too young for us to know definitively, chances are that her condition was caught before any neurological damage could be done, which means we shouldn't have any problems with speech or her learning abilities. She has proven time and time again that she is an extremely bright child. She has caught up and is even ahead of where most 2 year olds are, mentally speaking. I have no doubt that S is a very special child indeed, and will continue to amaze me as she grows.
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