Overall, though we've had plenty of therapy and appointments, the kids are all doing well and are pretty stable medically, which is a HUGE blessing. Here's a quick update for each kiddo:
Other than that, life has been typically crazy and fun. The girls are currently in dance and have a recital coming up in April. They've had so much fun practicing.
Last night I was able to meet up with a few of my favorite mom friends, who have been there since Conner and Madi were little, and who helped welcome Ramya and Deena home. I've missed my friends. We've always been blessed with such an amazing support group, and moving away was hard. Between having friends visit, and getting out with my friends, my heart is happy and filled.
- Conner: Conner had been back in speech therapy for about 6 months to work on his r's. He was motivated to get them down and just exited in December. Because that was the final sound he needed, he should be completely done with speech therapy now. We are all proud of him! He's been in therapy on and off since he was about 4, so this was a big moment to celebrate. He wanted to pick dinner, so of course that's what he got!
- Ramya: Ramya has also been pretty stable medically. She's needed some wheelchair adjustments and needed her AFO's lengthened (she's had her wheelchair about 4 years, and her AFOs about two, so I'm thankful she's finally grown a bit), and also has been continuing with vision therapy and attachment therapy, and we are also adding back in some cranial sacral work. She has OT, PT, and speech too, of course, but those will be ongoing therapies. We just did a routine renal ultrasound and she will need a full brain and spine MRI soon as well, just to see how things are going. We are praying everything looks good there. Ramya continues to make progress in homeschool and therapy, and we are proud of her!
- Deena: My little feisty Deena is doing great. We had a bit of a scare when her phosphorus came back low at her last infustion/blood draw. The doctors started talking about rickets, which would be no fun and would just further complicate her bone development. I upped her vitamin D, which was also low, then we re-tested her. Her test came back within normal ranges. She had another draw more recently, which showed that her counts have continued to improve. We were so thankful for that! She also has not had another break since her September one. during therapy This is HUGE and another big thing to celebrate. She had her first bone density scan, and though it showed a significant defect, the doctor said her scan looked better than she expected. Yet another big praise! Her bones are responding well to her Pamidronate infusions and she has gained so much strength. She spends much of her day standing and practicing walking and is highly motivated, which shows. She's progressing quickly in physical therapy as well, which is awesome. She's doing really well!
- Madi: Madi recently got an ALF (Advanced Light Force) appliance in at the dentist, and we are hopeful we will start seeing changes in her bite, jaw growth, tongue thrust, sleep, eating, and breathing soon. She wasn't a big fan the first few days, but she doesn't even notice it's in her mouth any more. She goes back monthly for adjustments and they are pretty quick. Madi is continuing with vision therapy and has also added in some cranial sacral work, in addition to her weekly OT and PT. She also just had a renal ultrasound and will have an MRI as well. That's a long, complicated story that has consumed hours to figure out, which I'll touch on later, but it should all be completed soon. Madi needed some hormonal testing done with endocrinology, which was not fun at all, but it's over with now, and we have the answers we need. She's has had a huge growth spurt, again, and no longer fit in her wheelchair or RGOs. Her RGOs are now in, though they are currently back in the shop for some adjustments, and she's so excited to be back up and standing. Her new wheelchair should be here next month, which is also exciting news. She works really hard and it's so fun watching her grow.
- Me: I know, I know, you never hear about my medical "stuff", but today you get to. I am so very thankful to be healthy and be able to do what my kiddos need, and not have many updates in this area. Last month I was diagnosed with SIBO (Small Intestinal Bacterial Overgrowth). I have a minor case, thankfully, but it was the answer to some uncomfortable tummy issues I was having. I was constantly bloated, puffy, and retaining water, no matter how healthy I ate and how many foods I cut out. I'd wake up first thing in the morning feeling bloated and full. You'd think I'd be skinny because eating hurt, but I love to eat, so that never stopped me. I've been on my treatment plan for a little over a month now, and I've felt so much better. I am not eating many foods, because of the phase I'm on, and am struggling to keep my daily calories high enough, but I'm trying really hard to keep my calories and energy up so I can do what I need to with the kiddos. My doctor allowed coffee, as long as I drink the Bulletproof brand, and I am sooooo thankful for that. I've been able to continue working out, though I feel my muscles get tired quicker than I like. It's all worth it to heal, though, and feel better. Some of my symptoms returned recently, though I haven't had any new foods or moved phases, so today I had just bone broth and no food to see if that would remedy it. Sadly, I feel worse today than I did before. I'm suppose to do just bone broth one more day, and then if that doesn't work, I'll go back on antibiotics for a few another round. Though the process can be long and I miss a lot of my favorite foods (sweet potatoes, popcorn, quinoa, salads, and so much more), I'm at peace with the plan. The most important thing I can do is take care of me so that I can be the mom I need to be, and that's exactly what I plan to do. I'm thankful to have found a good naturopathic doctor who is willing to dig for answers and keep me running strong.
David took the girls to the daddy-daughter dance at a local Church, and they had such a wonderful time with him. Three years ago, Ramya and Madi were headed to the daddy-daughter dance at our homeschool co-op when Madi had a seizure and couldn't attend. Ramya was able to go, which was really special for her, but Madi still talked about how sad she was to miss it and how much she wished she could have gone. When I read about the dance, I signed the girls up right away. I'm so thankful the girls have a daddy who loves them so much, and who cherishes spending time with them.
We had good friends visit this weekend and stay with us, which was so much fun. We went to ice cream twice (man did that ice cream look good), had pizza (even that looked good, and I gave up on pizza a long time ago because it always makes me feel sick), went to the zoo, and just enjoyed their company and conversation.
I think that's it for now! I'll update once the girl's testing is done and we know more. Have a blessed and joyful week!
Glad you are doing well.
ReplyDeleteWe have had lots of hospital appointments over the past few months too. We are currently on tethered cord alert for our son. I have emailed his urologist with my concerns and questions. We have a upcoming appointment with his urologist next week first thing to look for any changes in bowel and bladder function (another urodynamics test). His dad was the first person to notice that something seemed off. My son is doing well otherwise. He had his foot operation done in December and a follow up appointment in January. All was well until the end of last month when we both began noticing differences in his bowel and bladder function. Sigh. This resulted in calls to his urologist to beg for a appointment to do another urodynamics to evaluate his bladder and bowel function and note any differences in that area. I hate Spina Bifida.
We have been outside in the fresh air exercising as a family too. Lots of walks. Life is currently busy around here with medical appointments zoo days water fun play dates picnics walks and therapy sessions. We are going to the zoo tomorrow morning for the whole day. Now we are also starting to talk about adaptive equipment for our son’s future too. In September or October we are going to the adaptive equipment clinic to see what sort of equipment they recommend. I need to type up and print out a list of questions to ask them.