Life with Leah has kept us pretty busy lately. We officially have a sitter!! She sat for the first time on her own the other night. Ty kind of let go of her as she was sitting up on the kitchen counter. She put her hands down and supported herself. Then we put her on the floor with a pillow in front of her for a little support and she was very steady. Pretty soon she’ll be able to do it all by herself without any help. She’s also been practicing baby sit-ups with Daddy. She grabs onto his fingers and pulls herself up. We’re so, so, so, so proud!! I expected her to meet her cognitive milestones on time but had kind of prepared myself that she wouldn’t meet all of her physical milestones. She proved me wrong!!! At not quite 7 months old, she’s on her way to sitting up all by herself, which is beyond our expectations. I could tell she was pretty proud of herself too, it was so cute. I hope she continues to exceed our expectations!
We also have some fun news about our family. Leah is officially a big cousin! She was the baby on the Cunningham side for 6 months and now we have another nephew. Congratulations to my brother and sister-in-law on the birth of Colin Michael, who was born on Tuesday and joins big brother Shane. He is the 5th grandchild and the 4th in 18 months. Between my 2 sisters-in-law and I, we’ve had a baby every 6 months since November 2010. Family get-togethers are going to get louder and crazier but so much more fun. I can’t wait to get my hands on the little guy!
On Tuesday we had our usual day of appointments. We started out getting head and renal ultrasounds, and then we went to get results of the head u/s with our neuro team. The good news – her ventricles aren’t getting bigger and her head size is growing at a normal rate. The bad news – her ventricles are larger than our neuro team would like to see. That could just be that she has bigger ventricles, or it could mean that her shunt isn’t working as it should. I’ve said before that our neuro team is very conservative, and they have a hard time justifying putting her through shunt surgery if it’s still working. She is in good spirits, eating and acting normally, so it doesn’t appear to affect her. We’ve now had 3 appointments with little to no change in her ventricle size, so we come back in another 4 weeks. I think they are leaning more and more towards replacing the shunt. He did an adjustment to her shunt and moved the pressure down to 50, but he isn’t very confident that it will make much difference. We just have to wait and see.
Then we went to Spina Bifida clinic for the first time. Usually we just see our regular SB doctor after our neuro, but this time we went to clinic. At clinic there are 3 doctors – the SB doctor, the kidney/bladder doctor, and the physical therapist doctor. Clinic is a way for kids to see all of these doctors at the same time and for them to compare notes and discuss treatment plans together vs. having to see all of them individually. It’s great to have a team approach and see everyone at once, but it makes for a long afternoon and a lot of waiting. Leah’s renal u/s looked great again, which means she has very healthy kidneys. This is very important, as people with SB are prone to UTIs and can have a lot of trouble in this area. Our #1 goal right now is to keep her kidneys healthy, and it’s working. A lot of SB babies also need catheters to empty their bladders, and we are very fortunate that we don’t have to do that yet. As she gets older, we’ll need to potty train her differently, but we have a few years before we need to think about that. Overall she is in good health and is growing nicely. Dr. Marker, the SB doctor, told us we can feed her as much as we want until she turns 1, and then she’ll need to be on a skinny diet… LOL! But in all seriousness, this is an issue with children who aren’t mobile. We will need to make sure she eats healthy and manages her portions. Being thin will help her maintain her overall wellness but will also help her mobility. It will be much easier for her to walk when she’s not overweight. This is something that will be very important to her and us as a family.
Speaking of mobility, we also saw the rehabilitation doctor for the first time. There isn’t much for physical therapy to do today, but it will happen quicker than we think. Things are looking very good on the physical side. She does not have much movement below her hips, but she is very strong in her upper body. She has great head and neck control, and has strong arms. All of this is very important for her to start pulling herself up, rolling over, sitting, and then crawling. She gave us some suggestions of things to use with her as she starts to crawl that will help with her movement. Leah’s legs are very good, nice and loose. Her left foot is a little tighter than she’d like to see, but stretching that out will make it looser. We need her feet to make a 90-degree angle so she can fit into the orthotics that will help her stand and eventually walk. We’re very thankful she doesn’t have club feet or tightness in her legs and feet, as that could require surgery. All in all, we had a very positive day, still some concerns with the shunt, but she’s doing great otherwise.
Last weekend we participated in a charity 3K walk for the Children’s Hospital Neonatal Intensive Care Unit (NICU). We were among over 100 other families who have spent time in the NICU. We saw lots of multiples (twins, triplets), preemies, and other kids who needed surgery like Leah did. We also saw a family who has a daughter with SB that we had met at the picnic last September. It was nice catching up with them. Their daughter is 3 and her lesion is L2-3, just like Leah’s, and this little girl can walk. I love seeing other kids who have the same lesion that Leah has because it gives me so much hope that she’ll be running around, too. We walked around and saw an incubator bed and a rocking chair, just like they have at the hospital and it brought back lots of memories and emotions for us. It’s really weird to think back at that time that we spent at Children’s, both when she was first born and when we went back for her shunt surgery. It almost feels like it didn’t happen and I wonder how I got through it. But then I look at Leah and realize it was all worth it.
Wow, another long update. I have had people request more pictures. Come back in a couple days and I’ll get some news ones up. Also, please consider helping with the Spina Bifida genetics project that I posted about last week.
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