I wanted to share a few of the amazing things that have been going on with Laila’s health over the past few months. I feel like a bit of a broken record always writing about the amazing changes in Laila since her time at CLC in September but I feel like if I’m not sharing the blessings and getting the word out then I’m not being a good steward of the amazing opportunity that we were given to be able to be there.
As many of you know, Laila has several health issues. A few of her major ones that cause us the most problems are her urinary tract infections and her lungs. She just couldn’t seem to stay away from getting the UTIs and any time she would get any sort of little cold or cough it would ALWAYS turn into bronchitis and pneumonia and she couldn’t get well on her own without antibiotics. We also know that frequent use of antibiotics was not doing any favors for her digestive system or the fact that people eventually become immune with overuse.
Appointment #1 – Urologist. A few weeks ago we went for our usually 2-3 month check up with Laila’s urologist to discuss how she’s been doing and see if we need to change anything with her meds. She was shocked at how much better Laila is holding herself up and astonished that she is doing so well sitting on the potty. While Laila doesn’t always use the potty when she sits on it, just the position she is in, the openness of her legs, and that bit of time without a diaper are doing wonders for her. A lot of the time there is a tiny puddle of urine in her potty which is more than likely a little bit that she had refluxed when she had gone in her diaper. That reflux would normally sit in her bladder and the longer it’s in there the more chance for infection. So with progress we have been released from her urologist for one year! How amazing to have have one less appointment that we need to drive two hours to for a specialist every few months. How amazing that there is one more thing going right with Laila’s posture that is affecting how her body systems work together. Praise the Lord!
Appointment #2 – Swallow Study – Laila’s GI doctor had asked us in August to schedule a repeat swallow study from last fall just to see where her progress is on oral feeding and see if there is any cause for concern. We pulled into the parking garage and were back out on the road in 45 minutes. She took six bites of food and three drinks of milk and they said she looked amazing. They even thought about releasing us to go back to un-thickened liquids but I asked that we not do that. I don’t mind thickening and while I’m excited about her progress, I don’t want to push too much too fast. They seemed relieved as well that I would prefer to continue to thicken because honestly they’re only see a small amount of our daily feeding and while she didn’t aspirate right then I would be afraid she may later. The very neat thing about that though is that we now give her daytime medications by mouth. You don’t know how freeing it is to not even have her pump or tube even leave her room most days. Not only do we not have to deal with them, it also frees us to be able to leave her with babysitter more easily. Most people are intimidated by having to deal with her button but if I have to leave a little syringe to give her meds in her mouth, that no big deal. While on the food subject, we also think that the increase in trunk support has also helped her stomach muscle to digest her food better. She can tolerate way more volume of foods now at one time and is tolerating a way higher rate on her pump at night than she has ever done before. She is currently most days taking a little over 50% of her daily calories in by mouth during the day. Again, Praise God!
Appointment #3 – Pulmonologist. Last Friday we went for our 2-3 month check up with Laila’s pulmonologist. Again, another doctor shocked at the fact that her trunk support has increased so greatly and that greatly decreases her difficulty her breathing. When she isn’t hunched over her rib cage is open and has room to expand and contract the way it needs to for her to take better deeper breaths. Included is also the stronger muscles to cough. This is so huge for her to be able to have a bit of something in her airway and be able to get a good strong cough to get it out. Again, in the past when she didn’t have the strength for that, any little bit that would go into her lungs would cause infections and lead us to more antibiotics because she couldn’t clear it out on her own. Another thing that is so second nature to us but has been so difficult in the past for Laila but now I see her actually proud of her cough. It sounds weird but I sure don’t take that for granted anymore. With this doctor we didn’t quite get released for a whole year but he did say that we didn’t need to come back until spring allergy season to see how she’s doing. That’s another six months from now and I can’t tell you how excited I am to be cutting down on some of this driving for her appointments!
Appointment #4 – Surgery. While this doesn’t have much to do with her CLC progress, I’d like to share how well she did from her surgery and give God glory for that. She had strabismus surgery and tubes put in her ears last Tuesday. She did incredible! She had a little trouble waking up from the anesthesia and the nurses had to come and get me to come be with her in recovery. They weren’t sure if she was upset from pain or fear but it turned out to be fear because once she heard my voice she calmed right down. I always wonder what is going on in her little head and if she flashed back to previous hospital visits or surgeries and wondered if I’ll still be her mommy waiting for her when she fully woke up. I can put into words how much my heart melted when the nurses said “she just needed her mommy.” I’ve been her mommy for over a year but it still feels good every time she shows me that and how I really am that special person in her life and and forever. I was also very thankful to have my friend Melissa come with me to help me out with Laila and be my moral support while I started crying praying over the nurses that were taking Laila to surgery and would be my stand-in in the operating room. Sometimes I wonder if the hospital staff thinks I’m some religious weirdo but I don’t care. I want God to be in the operating room and especially guiding those hands and the nurses to be able to speak a special word over Laila to calm her when I can’t be in there. Here are some fun pictures she took that day. It was fun to have my photographer friend with me :)
So, all in all we are going through an incredible patch with Laila and I thank God for every day of it. I’m learning to rejoice in today and not put today’s expectations on tomorrow. We had five days after surgery with not a drop of vomit and then Sunday it came back for a day. While before that would’ve devastated me and made me question why God would let me glimpse good only to take it away, I now know to rejoice in today and to not think of our amazing God that way. He doesn’t sit waiting to disappoint me, He teaches me through my weaknesses and for that I CHOOSE to be grateful!
