MRI:
Lydia's MRI came back and both girls have a cyst in the pineal gland which is in the brain. There isn't a ton known about cysts like this... they are typically an incidental finding however both girls have symptoms that these cysts are symptom causing. Cysts in this part of the brain cause issues with sleep (the small child was up from 3:50-? last night... she fell back to sleep before 6) and headaches which Lydia has been having. There doesn't seem to be anything we can do about the cysts however it does help to explain some things.
Miralax:
When we were at NIH they wanted us to switch from lactulose to Miralax, they gave us a couple of reasons but they didn't stand out as an intimidate need although they wanted us to switch while we were there without talking to our home team, which was a red flag to us. We have had conversations with our home team and have decided to stick with lactulose. A small amount of lactulose daily goes a long way for my kids most of the time and it works at baseline... it doesn't work when not at baseline but when not at baseline we have to use an emema because the GI system stops moving. Miralax seems to be loved by some hospitals and hated by others and it is controversial enough that conversation about it is banned in most feeding tube groups. I feel neutral about it but we need to look at each med choice based on my kids and based on their needs, as a home team, we have decided it is not the best choice. Our home team does use it for some kids... but it felt like it is the only med NIH likes which once again sends up red flags for me.
Motility Meds:
We took Jillian off of daily erythomycin for motility over a year ago because her porphyrin urine tests were coming back elevated (like double normal range) and no one was sure why. I went researching and found that erythomycin can cause that test to come back higher so we took Jilli off those meds to see if it effected those levels. It is also wise to take breaks from that med so the body doesn't develop a resistance to it. We noticed the return of some GI motility symptoms when she went off the med however it was livable but over the last couple of months her GI pain has become worse and worse. We knew part of that had to do with a rate increase and a higher formula concentration but we need her to get these higher levels because her weight gain has been poor for the last year and a half. To help her body be ok with the higher formula we have put her on azythromycin daily. She has been on it for a week already and it seems to really be helping. We also backed off her formula concentration a little bit. She is spending less time on the couch with stomach pain which is great!
24 hour urine:
Lydia did a 24 hour urine test last week to look at salt in her urine to see if that helps to explain why despite going up in calories that she is loosing weight. I am still waiting to hear back on the plan from the results. We will likely be adding salt to Lydia's formula like we do with Jillian's and possibly be going up on calories again. She has started to grow into 18mo clothes though which is a positive thing! Her proportions are changing some from baby to toddler. Another thing we noticed with doing the 24 hour study is how little she pees in the day... this has always been the case but it was shown even more when you are collecting urine!
Vitamin A:
We checked Jillian's vitamin A level again last week because her body seems to need a multi vitamin and formula so we need to watch to make sure she is not getting too much vitamin A. Thankfully her level is the exact same as it was a year ago. The even bigger thing then the blood level was how well Jilli did for labs! Labs have been less fun since we used a lab closer to our house last year and they decided to do a finger prick instead of a vain draw which Jilli hated... she was starting to become more ok wiht labs again and then NIH happened and labs became horrible. Our home hospital stepped in and helped put supports in place... Jilli made a new friend, the child life specialist in the lab who has been helping her work through stuff and we have been very grateful for... but the biggest thing that seems to have helped is the doctor appointment before labs, the doctor listened to Jilli. Jilli left that appointment feeling heard and that someone cared to help her... and her choices since have changed a lot! When we went to labs this time she sat in the chair herself... she asked for cold spray and held on buzzy herself. She played on the child life ipad while the blood draw happened. Child life and I were amazed... I sat and tried not to cry because this is the kid I feel like I have been missing for months. This is the kid that I have felt like I lost in the trama of NIH. Its not that we expect her to handle every scary medical test without feeling anxious... having feelings isnt the issue... but how those feelings were being displayed in ways that hurt herself and others were an issue and it did my heart SO good to see the kid that I have known all of these years.
Kindergarten:
We have finished kindergarten! There were parts about this year that looked different then I was planning but overall she made some great gains this year! This summer we are going to work on fine motor and hand skills things to help develop her handwriting more because hand endurance and planning is standing in her way of doing some of the things she wants to do so we are going to focus on that more... bring on the playdough time
Leg braces:
The girls had an appointment a few weeks ago for new lag braces. We got to pick up the new braces next week. I am hopeful that this will help with the falling that the girls have been doing lately and the extra leg pain.
Big girl bed:
Yesterday I put together Lydia's new big girl bed frame that she was given for her birthday. Which also means I took the crib down. I see in this situation God's graciousness towards me. When I was a kid I said that I wanted to have 12 kids lol... as I grew up I lowered that number, and at this point in our lives that number is 2 based on the fact that my body did not handle pregnancy well either time (like my OB asked if she could tie my tubes during Lydia's c section because of how hard pregnancy was) and just what we can handle as a family. We have talked about maybe doing medical fostering when the girls are older however that is something that we are just going to have to see how God guides paths along the way. I have struggled some with what to do with our baby stuff but now that we are actively working towards moving I see all of this stuff and don't want to move it to a new house. Brent and I are both people who see things and think that we might have a use for it someday so we keep it... that is why our house has SO much more crap in it then we possibly need... so I am trying to change this about myself... and part of that takes faith that if we do need something again that we gave away that God will provide. That doesn't mean we are giving away Jillian's clothes before Lydia grows into them, but it does mean that we are looking at things and making choices if that is something that we need to keep right now. I was feeling a little emotional about taking the crib down but then a situation came up where someone needed a crib and we were able to help. I am a person who giving and helping really motivates me and God very kindly used this situation to help my heart through going through a life milestone.
Big girl car seat:
Both girls are really small meaning Lydia still technically still fit in an infant car seat... especially the Chicco fit2 which is meant for kids until they are 2. Lydia has preferred to be in this seat until a month ago when we came home from RMH and she declared that she is a big girl now and wanted a big girl car seat. She is now riding rear facing in a Chicco Nextfit. Jillian is also very small for her age and has still been rear facing because her height and weight were still within the rear facing limits and she was fine rear facing until recently when she asked to be flipped the other direction. Since she is 6 we agreed to let her. Since she started forward facing she is working on learning how to buckle herself! I am glad we extended rear facing as it is safer but I am also proud of the skills Jilli is working at learning now.
Big events:
I wrote a few blog posts ago about a few big things we are involved in (you can click here to read that post) the sign ups for some of those things are ending soon so if you are interested in joining us for them sign up today before signs ups end :)
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| There are rocks a couple feet under the grate and every time Lydia sees it she looks at the rocks, gets sad and yells for Toodles (from Mickey Mouse Clubhouse) because she is worried the rocks are sad and lonely down there |
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| Working really hard at coloring in the lines |
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