Last Thursday my parents, the girls and I headed down to Shriners. We left early and got lunch on the way. They called us into a room and a fellow and med student came in. I gave them a short history and showed them the video of her walking with a push toy. A lot of what they needed I brought as records with me (med lists, hospitalization info, surgeries, ect) so it was easy to just hand them the papers so I was not having to remember everything. Then the doctor came in. He is the same dr that Jilli sees there. He is nice but I don't think he really understands the scope of my girls' medical needs. He first said to do an SMO on just her left foot. I was a little worried about this but figured I would talk to the guy that makes the braces and get his thoughts. Then we waited and wait, for over an hour and a half. At one point the nurse came in and was surprised to see us still sitting in the room waiting to see the guy for casting. Eventually the casting guy came in and he asked a bit about what was going on and I showed him the video and he said he wanted to talk to the doctor. Then he and the doctor came back in and we all had a more technical conversation. I understand some parents don't like it when big words are used however I prefer it. I want to be in the conversation and have deep conversations about what is best for the girls. During this conversation it was agreed that just one SMO was not going to help with the issues Lydia is having so we are doing two Sure Step Advance AFO. I think this is a better plan. Then they brought us to the casting room. Lydia did better for casting then I thought she would. Her braces should be ready in 3 weeks so we have an appointment at the end of the month to go back. It was then rush hour time so we headed back home and met Brent for dinner. I am hoping the AFO help her and help to prevent more bowing of her leg.
This weekend we worked on cleaning the house and Brent started working on putting in paver stones at the foot of the deck. We have always gotten big puddles and mud there when it rains and that is where they come in with the oxygen. This weekend the goal is for him to finish that and a couple of people are coming over to help rip out drywall in our basement because we got water down there this spring and a couple of other projects that need to get done here. If you are able to help contact Brent.
Yesterday I worked the Never Say Never playground golf outing. It was a long day but for a great cause! There are still multiple components to be sponsored or pickets for $50 each, check out the website for more info. We will also need hands to help build it next year!
In other big Lydia news, she moved to a Comfy Lift bed on Sunday night. Friday morning I woke up to her crawling out of the Serta infant sleeper (like a daydreamer) and we figured we were going to need to figure out a new sleeping arrangement for Lydia faster then we were hoping. My parents have a Comfy Lift bed at their house for when we spend the night there so we are borrowing that for now. Their version is a little different then Jilli's version at home (they got theirs during a special sale) and the foot part is not raised as high as Jilli's so we had to figure that out but now we have it working. This morning she did not want to get out of bed. She has Finding Nemo sheets on it and just wanted to point to the fish this morning. We put the Comfy Lift inside of the crib so that she has sides because without that she would just leave.
Lydia also decided to give me a scare this morning. I was upstairs getting Jilli out of bed and Lydia found my breakfast bowl which I thought was out of reach (I think she is elastigirl!) and put a piece of French Toast Crunch in her mouth. Thankfully she did not swallow any of it and just gagged it back out. I think she has completely lost her ability to swallow anything but saliva, and I know normally that would be sad but in situations like today it is best that she can not swallow it and risk aspirating it, instead I just got a wet piece of cereal and saliva back on the floor. We still need to watch her lungs closely for the next few days. Jilli would put some things in her mouth when she was little but Lydia digs tiny things out of the rug (I end up vacuuming a lot) and is just super girl at getting thing she shouldn't.I love her but man is she exhausting most days just trying to keep her safe.
I also got a message from Special Needs that GI is now officially on the schedule to join in Jilli's ear tube surgery however GI said they don't need to do a scope for Lydia this year?! I am rather confused because we were told Lydia would need a year EGD, she has had two large GI bleeds since her last EGD where we almost had to do an emergency EGD with each of those but then when the bleed stopped they said that we would take a closer look at her yearly EGD. Its not that I want to send her o the OR to have an EGD, the stress is so high anytime either of the girls is in the OR no matter how small the procedure but she has had two large and multiple smaller GI bleeds this year that we have not explored because the goal was to wait until her yearly EGD and now we are not doing that?! If it had been a calm year for her GI wise and she was older I would not be thinking twice about it, but she has only had one EGD at 3 months old and it was around this age that more started to show on Jilli's EGD which makes me even more nervous. I also want to know if there is irritation at the spot of the opening in the g or if the irritation in her stomach is in a different spot. We see GI again in October and my plan is for us to sit down and talk about this more then because I need to know why the change and what our plan is, however if she has another large bleed I will be pushing this sooner. We also discontinued her Ranitadine today after a wean off because she is on such a high level of her PPI her GI wanted to try to get her off the H2. We have already seen an increase in output with dropping it down to once a day so we will see how she does off of it. This also makes it more likely that a bleed will happen. So for now we wait and see.
Jilli's therapists sent a letter to the state answering their questions so now we are waiting to see what they have to say. I feel like the medical life has a constant Jeopardy soundtrack playing lol! Jilli has been very into doing school work lately. We did an experiment with sponges and evaporation. She loved it! She loves to learn. She is also loving not having the pulse ox on all the time. She still has it on at night and I figured that would be a fight but she is so happy to not have it on during the day that she is fine with having to put it on at bed time. I am so thankful that Special Needs worked with us on that.
 |
| Lydia is doing well wearing her pump |
 |
| We watched Tim Tracker's YouTube video of the 4th fireworks at Disney world from home on the 4th... no fighting crowds or bugs and we watched it before bedtime |
 |
| getting castings for braces |
 |
| What I woke up to Friday... |
 |
| Lydia in her new bed! |
No comments:
Post a Comment