Meghan's biggest issue is the back of her shunt turning red periodically. We've discussed this with her neurosurgeon and he believes this could be because her shunt is draining at too fast of a rate. We noticed this issue happening 1-2 times/week a couple months ago, but it does seem like this is happening more often lately. The plan is for Meghan to have a rapid MRI (no sedation and the MRI will only look at her ventricles so the MRI will only take 5 minutes) in about a month. Her NS will look at the size of her ventricles and if they are still small in size, he will turn down her shunt which will allow the cerebral spinal fluid to flow at a slower rate. This will hopefully take care of the redness. I have noticed her itching around the area of her shunt and shunt tubing lately as well. Hard to say if she is just feeling it though as she now knows her shunt is there. I always held onto hope that her head didn't hurt her. However, my heart broke a couple weeks ago when she woke up in the middle of the night. She was unconsolable for a good 10 minutes. I finally got her calmed down (thanks Dora) and she laid down and pointed to the back of her head and said owie (in her own word). I just wish I could go inside her little body and feel whatever she feels and take away any pain she might have.
Her speech.......oh.my.goodness!!! LOTS of progress the last few weeks! She has added 3 words (yeah, ice and on) to her vocab in the last month. Her favorite thing to say right now is ah-o-moe, which is Meghanese for I don't know. She is doing great saying single words! She does struggle stringing a group of words together, but this will all come along eventually. Once again, we are so lucky to have a great group of therapists working with Meghan!
We did hear back from the Geneticist and Meghan tested negative for Russell Silver Syndrome (a form of dwarfism). So, the next step is a skin biopsy which will be done during her next sedated MRI sometime in May.
Meghan had her eye doctor appointment last week, which went great!! The eye doctor has no concerns about her vision and from what he can tell, she doesn't have any neurocuteounous syndromes (which is on the Geneticists list of possible conditions). He will get in touch with Meghan's geneticist with the results from today's appointment so they are up to date as well. He would like to see Meghan in a year again to double check her vision seeing objects distantly. He said she wasn't seeing as far as she should be, but she also wasn't very cooperative during this point in the exam, so her uncooperativeness is most likely the result of her low score when he checked her distance. So it sounds like one more check up in a year and if there are no issues, he will not need to see Meghan again!
Meghan's biggest news is that she is now able to walk down an entire flight of stairs unassisted!!! She did this for the first time on Monday...twice!! The little stinker hasn't done it anymore since Monday, but that's fine because now we KNOW she can do it. This is one of her therapy goals that she has been working on for a good 6 months. But, in order for her therapists to be able to call this goal accomplished, Meghan has to show them that she can do this for 3 consecutive home visits. Let's hope she will be willing to show off her new talent to them the next 3 visits so we can get this goal crossed off her "to-do" list!!! This goal was dedicated to Meghan's runner, Jenn! Meghan's next goal she will dedicate to Jenn is to walk up an entire flight of steps unassisted. This will take time yet as it's a lot of work for Meg's little legs. At the end of this blog post is a video from the day she walked down the entire flight of stairs unassisted. She wouldn't go down all of the steps by herself while being videotaped as she gets camera shy!!!
Today, Meghan and I set out on an honorary run for Meg Cross Menzies. She was a mother of 3 small children, wife of a police officer and a dedicated runner. She was tragically killed by a drunk driver the morning of January 13th while she was on her morning run. I have very recently started running...very small distances. This tragedy touched me and I wanted to do something to honor a life that was taken way too soon. An event was created called Meg's Miles. Anyone who wanted to run, walk, jog, could do so anytime of the day on January 18th. So...Meghan and I decided to run 1.5 miles in Meg's honor. It was the longest I have ran since high school, but we did it. We did this in honor of Meg, her children, her husband, but we also wanted to do this to show our support for Meghan's runner. We want her to know that we support her love for running and we think about her while she's on her runs or at a race event and we pray for her safety all the time. Please take a moment to say a prayer for Meg's family, especially her husband and children. Hold your children and loved ones closer, take a moment to call someone you haven't spoken to in a while and tell then how important they are to you and count all of your blessings. RIP Meg!
Here's the stairs video...
