Well, here I am, finally getting this update down. I can't make any great excuses. I just have to pick and choose what I can accomplish each day. Unfortunately, I have chosen to do some other things ahead of this blog. They are worthy things, in my book at least, and you'll learn more about them later in this post. So, that said, I'm sorry to have kept you waiting even longer than usual.
Avery is attending school 3 full days per week. She is in a special ed preschool class at IPS School #15. Everything has gone pretty well thus far and we are happy to report that she has a pretty great team of therapists and teachers working with her. Her teacher is very clam and caring. The children literally fight over who gets to sit next to Avery during circle time. Another brain injured girl can't stand it when Avery is upset. She comes to Avery's aid, bringing her toys and trying to make it better. She gets this concerned demeanor when the OT works on oral feeding and she has to be assured that Avery is OK. Even the most rambunctious boy in the class is smitten with Avery. Apparently he is so calm around her and wants to always sit by her. Kara, their classroom teacher, has to make them take turns sitting by her :) They all get excited when Avery giggles or makes vocalizations. Another little boy with CP and g-tube comes up to her and lays his head next to hers or touches her face. It is absolutely sweet and so comforting that this is the environment she experiences at school. The head sp ed teacher also adores her and threatens to take her home with her all the time. She comes in each day Avery is there to get her "Avery" time. How great is that?
Avery keeps a very busy schedule. In addition to school, she receives outside therapies. We go to Riley on Tuesday and Friday mornings for PT and OT sessions. We also travel to the far north side of Indy on Tuesdays for hippo-therapy at Children's Theraplay. Now we have to add 3 sessions/wk of speech therapy, as well as 2 additional OT sessions. It is about to be really crazy! We are also working with Avery's nutritionist from First Steps, Trina, as a private pay. She is coming once per month to the house to help guide us through a change from medical formula to a homemade blended formula diet...which we hope will be better for her from both a GI and neuro standpoint. Trina is making sure that we are getting the proper nutrients, vitamins, and calories in her diet and she is tracking Avery's growth through weight and length. We are grateful to have her assistance! We are also set to begin working with a feeding specialist, again as private pay, in home so that we can work towards successful and meaningful oral feeding. Doing nutrition and feeding as private pay allows them to come to our home for the treatments/consultations and saves us from having to travel to even more appointments. Even with the expense, it is such a benefit that we appreciate.
Avery continues to have nursing care through Medicaid disability while I am working and she is at school. She also has a nurse that spends a few hours with her Friday afternoon so that I can have "respite" time to run errands or work on other projects. I can't thank these wonderful women enough for the work they do for us each week. They take such great care of Avery and they adore her! They are great to our whole family. We realize how very blessed we are to have them and we are so grateful!
I wish I could report that Avery has made some huge developmental gains, but she hasn't. This is not to say that she has made no gains...just not a big leap of any sort. She is still working hard on head control and torso control. Both continue to get better...but we aren't there yet. We are hoping that PT, especially the hippo-therapy, will get us there sooner rather than later. We will see. She has made some significant improvement in the vomiting/GI world. We recently added a medication to help speed up her gastric motility (one she had previously been on about a year ago) and it seems to be helping in a big way. She recently gained more than a pound over the course of 5 weeks. That has not happened in a LONG time. She had fluctuated between 26 and 27.5 pounds for about a year. Last week she weighed a little more than 29 pounds. We celebrate that success! It will also help with the oral feeding work we are about to begin.
On a different note, we continue to see daily seizures and she has some rough days. We have seen a recent increase in the worst of the seizures she was previously having off and on. Some days she's had as many as 7-10 of this particular type. It is hard to see and it is hard to not be a bit heartbroken by them...to feel a bit defeated. She has gone through so much to still have this many seizures, particularly this type. Making it worse, she seems to know they are coming and she screams and looks so scared while they are happening. I grab her and just hold and rock her through them while telling her that it is OK and that "mommy's here, mommy's got you"...but, it is not OK...not really. I hate them...I do! I want them to disappear so badly. Why can't they? Needless to say, Jon and I are now looking at what is next. How can we help her now? This just can't be just the way things are going to be for her for the rest of her life! I can't believe that...I can't give up hope. We don't know what the next step is yet...but we will. To aid us in making any decisions, she recently had a 24 hour video EEG and an MRI. We will see what clues those give us about our next steps.
Caiden is doing so well in school. His midterm report was 10 A's and 2 Bs! Of course, we are very proud of him for working so hard. To his delight, he is now getting the chance to do even more advanced math with a group of a few other 2nd graders. He's been talking a lot about that. He also says that he loves science! Well, since Jon and I both have science degrees, we find that interesting. Coincidence, nature or nurture? He had a Thanksgiving meal in his class this week and I was able to attend the feast. It was fun for all the kids to eat such a meal together and to talk about all the things they are thankful for. It's just really great that they are getting these extra experiences. He has a Winter performance coming up in early December and we are looking forward to seeing all the kids sing and play violin and otherwise perform.
He recently lost his 3rd tooth...one of the front top teeth. The other one is now really lose. I suspect he will be a true "all I want for Christmas is my two front teeth" before much longer. Right now it looks funny, with one missing tooth and the other shifted over and sticking out. Jon keeps teasing him and calling him "Hillbilly Caiden"...not very PC or nice, but we all think it pretty funny! Of course, he is all excited about Christmas...though, he is really starting to ask a lot about Santa...wondering if he is real. We ask him, do you believe he is real. Sometimes he says "yes" and sometimes "no". We tell him that we believe in him, but that Santa only comes to those children that believe. For now, that's the way we are handling it. His wish list includes nearly all Pokemon items. When he likes something, he is ALL about it. Too bad he is fickle when it comes to these things. Once it was Bionicles, then Harry Potter, then it was Star Wars, next was Indiana Jones...know Pokemon. And when he is done with one, he is DONE. Until then, he memorizes everything about it/them. Know, if he could just remember what he did that day at school in addition to all of Pikachu's incarnations and powers (or whatever they are called!)!
Jon is still working at INDOT and doing well. Not a whole lot to report on his end. He works hard, helps at home and it a great Dad and husband. We are trying to get the house in shape for Christmas and decorations. We are looking forward to the opportunity to spend time with family we don't get to see often. We will be in Tell City over the holidays and we will also be having company at out house over the new year. We finally get to meet our nephew Jack! And see Megan and Dave...who was haven't seen for 3 years...holy cow!
We have done a lot of things over the late summer and the early fall. We took a trip to see Jon's brother and our SIL and nieces at their house on Lake Huron in Michigan. We had a great time! We also participated (CRAZY!) in our churches Home Tour for the Fall Bazaar. Om my, was that a lot of work and craziness. We we working like mad to get the house is some sort of order to show. I don't know what we were thinking! Though, it did make us get some much needed stuff done around the house. The main bath is no longer navy blue! A few less projects keeping us from selling the house now.
I am doing well. I am still enjoying my work for ASK (About Special Kids). In October, the grant I work under had some budget cuts so I now work 15 hours per week instead of 20. We as an organization were not happy about that, but out hands were tied. I don't mind really, except that I can't get my work done well in that little of time...but, I couldn't do so before even at 20 hours because the need is so great! Frustrating...but welcome to the world of charitable non-profit work! It did allow me to move to a home office set-up though...so that helps with travel costs and actually "gives" me more time to do other things since I don't have to leave the house to work! I do miss seeing all the office-based ladies though. I've learned so much from them over the last 9 months and I couldn't be prouder to be a part of such an amazing group of women!
As I mentioned in the beginning, I have been working on some other worthy projects. First, I have been working on getting the Hemimegalencephaly Family Support Network I created to be fully functional. I am getting closer and am excited to be preparing to relaunch the website in January. It has been a lot of work and a lot of HME mom's have pitched in to help. This project is as much theirs as it is mine and I can't wait to see where we go with it in the future. I hope that is will be a HoME to all HME families.
The second project is something I have long wanted to see and am very proud and honored to be a part of. It is an organization call The Hemispherectomy Foundation. It was founded this summer by a family from Texas whose child had a hemispherectomy for Rasmussen's Encephalitis. We met the Hall's in Baltimore during Avery's last surgery...they we there for Jessie's consult. In the midst of all they were going through, they found the strength and the means to start this organization. WOW! AS it began to grow, they asked me if I would be interested in a Foundation position as the Specialty Director for Hemimeglencephaly and Cortical Dysplasia. I was honored, and after some initial thought and reflection, I agreed to sign on. This Foundation is just what families, with facing or having undergone hemispherectomy surgery, need. I couldn't be prouder of what the Hall's and their founding team have created and how much the Foundation had grown just since July. It's amazing really and I hope you will take a bit of time to explore the Foundation website. If you find it in your heart to offer any financial support (no matter how small) for its missions, it would be a very appreciated gesture I assure you. It could be as simple as buying our hemi kids-designed Christmas cards...you support a great cause and get some really special and cute cards in return :)
Lastly, I am working on moving this blog to another site...yes, again...I'm sorry. It is a free site (this one is not), which is significant in our current economy. I plan to use it to host all the info that is in Avery's website as well...and thus close the www.averypaauwe.com website (also a monthly fee). Doing this will not only save us money, but create one spot for those following Avery to view updates and information about her. It will also make it more streamlined for me to manage and update both the updates and the web info. I hope you will find it to be a good change. You can prepare for the move to the new site even now...as it is functioning. Just be fore-warned that Avery's Pages are still a work in progress. I was first concentrating on getting the current info from the website transferred over. More updates and changes will be completed in the future. You can check it all out at www.thepaauwereport.wordpress.com. Let me know what you think about this move...good or bad.
OK, well I think that I've monopolized more than enough of your time with this post. I hope you all had wonderful Thanksgiving celebrations and found that you had so many things to be thankful for. We sure did! I also hope that this transition to the Christmas celebration of Christ's birth is one of peace, joy and connection to the true meaning. Thanks you, from the bottom of my heart, for continuing to follow Avery's journey, and the rest of us by proxy.
Happy Holidays and may you receive many of God's Blessings this season!
With love,
Holly
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