So far behind - I’ve got 7 months to go to get caught up. The below are month by month updates I typed up a while ago, hoping to get further than I did. Just a brief up-to-date update; Brooke is doing awesome. She’s still rocking and rolling, proving her Neurosurgeon wrong. She’s army crawling all over and is up on her hands and knees often and starting to do a little crawling while on her knees. She sits up 100% and transitions from crawling, sitting, and she’s beginning to pull herself up on her knees. She’s beginning to go up stairs on hands and knees (not like a typical, full able bodied child, but she’s doing it Brooke’s way on her time table). The stairs are smaller carpet covered ones on the indoor slide at daycare. She has a stander now too, which is good for her to be in, but she does not like being confined to one place. I need to see if we can add wheels and make it dynamic so she can roll around while in it. I’m also trying to figure out if we can get her a ZipZac wheelchair for the summer for outdoors with her peers. Her SB clinic team is not the biggest fan, but PT and I think it would be great for her to be able to get around and explore outside like her peers do. One major obstacle, the price. Since we have private insurance, they only cover wheelchairs every so many years so they would not cover the ZipZac and they are NOT cheap. Brooke is scheduled to go back to the Spina Bifida clinic to see all her Dr.s in April, so we’ll get the scoop then. Anyway, it’s late, I have a ton to fill everyone in on, but I have 7 more months to go. So far behind... someday, someday...
July - Brooke had lots of xrays, ultrasounds and Dr visits. Kidney ultrasound showed her kidneys are healthy and she has no reflux. She’s emptying her bladder on her own still and has good pressure, which is a huge ‘hooray’. This means no cathing (draining the urine from the bladder with a catheter), for now. She had another head ultrasound, still proving her Neurosurgeon wrong, couldn’t be more proud. ;-) Still shunt free. Brooke popped a couple more teeth. While drying her off after her bath, she laughed with her mouth open wide and low and behold, 2 upper center teeth had broke through.
June - I can’t even remember June... Brooke is still getting PT twice a week and her PT, Ann is awesome. They’re a great match. Ann is constantly pushing Brooke and Brooke is loving it. Brooke is rolling over now from back to belly. She has got abs of steel.
May - Brooke had her another muscle test and her first MRI on the 10th. MRI was mainly of the brain. Her Chiari II Malformation is not very severe, but it is there. Her Neurosurgeon, Dr. Bowman, was really pleased with the scan and is always happy that Brooke is proving her wrong. Brooke keeps getting A+’s from her so we’re stoked.
Brooke is already growing out of her little AFOs. They’re cute, but I’m not the biggest fan and after what we thought was the start of a pressure sore, I kept them off for a week. In that week of no AFOs Brooke’s PT, Ann, was tickling her lower legs and noticed movement in her right big toe. The movement in her big toe goes along with function at the L4 (lumbar 4) level. Considering they feel her lesion level is around L2-3, that is great to see. Ms. Sabina, the best daycare provider on the planet, noticed Brooke moving her feet slightly as well. I don’t like having the braces on for 23 hours a day, as we were told they should be. I feel her little feet and lower legs need some exposure and room to move, what little they can, but still some room to wiggle that little toe if that’s all it is. Needless to say, this mama was excited over a little toe movement. She is not weight bearing on her legs and likely won’t be for quite some time. The prayers are working though, please keep them coming.
April - We got a tooth, make that ‘teeth’. Also, casts are off, YAY!!! Casts are off and now she’s in AFOs. Her toes look squished and her poor little tibia and fibula are bent and bowed from trying to grow in them, but I keep getting reassured they will grow straight and correct themselves. The AFOs have taken just as much getting used to as the casts in the beginning. These are more friendly though. I can take them off and massage those cute little feet and toes anytime I want now. It’s the little things that excite me. I love those toes. Brooke is still feisty and we’re starting to work on tummy time more now that the casts are off. She still hates every minute of it, like most babies.
March - we spent the month of March in casts. On the 19th we were at the SB clinic seeing all the doctors once again, standard procedure. Brooke saw ortho and she got her casts swapped out. I feel so bad for her little toes and tibia and fibula which really have no where to grow in the darn things. Hate them. She had another head ultra sound which shows her ventricles are holding steady and no need for a shunt or other intervention. At this point her NS thinks she would try a different procedure before putting in a shunt. They’d try something temporary like a reservoir or try the ETV, I believe this is the procedure she was speaking of. The ETV is a procedure to use another ventricle to help circulate the CSF instead of a shunt draining it off into the abdomen. It would be great to avoid a shunt all together since its one more thing to constantly monitor and likely stress over. Praying she never needs one and that her head ultrasounds keep showing that she’s doing just fine without one.
February - Brooke turned 3 months. Time is flying. Work is insane for me right now with our project underway. I go non-stop sun up to sun down and a few times in between. I’m still exclusively pumping since Brooke prefers her bottle. I can’t blame her, it’s a lot less work. Foot surgery - So Brooke ended up getting her foot surgery on the 27th. We spent the day at Lurie Children’s and all went well. She did great and came out of the anesthesia just fine. They didn’t have to heavily sedate so it worked out that she was awake and doing great by late afternoon so we got to bring her home early evening. They ended up putting pins in both feet. The ortho also misinformed us when she told us she’d be casted for 3 weeks, that was a mistake. She ended up being casted for 3 weeks straight, then another 3 weeks on top of that. Yes, 6 more weeks of the darn casts. So glad that is done and over with. In the end we got so used to them, it really was nothing. We’ve moved on to AFO’s, they take getting used to to. I’m not the biggest fan but we’re all getting used to them.
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