Friday, September 7, 2012

Update: as in, there are simply NOT enough hours in a day

I have thought about an update for many weeks now, but since the boys came home in April, each day is so full that I find it hard to take time to write! Part of that is because when I sit down, it is usually to fill out more paperwork or something equally as captivating and before I am even done with that task there appears another at my feet (normally in a little hand tugging at my legs to pick him up!) Well, enough complaining! I am trying to get the boys on a nap schedule now that everyone else is in school. I would have to say, no matter how tired they are, they miraculously gain super strength on the walk to their bedroom. I have the monitor on to amplify every little breath and wail, so as to not miss a thing. Today, it's a concert of screeching and laughing. It appears they are taking turns keeping the other awake. I will start with the youngest first, since that is how to try to do things around here. It used to be the squeaky wheel gets the grease approach, but we have several squeakers that used up all our attention so this approach works better for us now. Isaiah is the youngest, at 27 mo., but no longer the smallest! He has made it to about 28-29 pounds on our scale now, and my aching back can prove it! He is so joyful and is usually the happiest kid on the block! He has a feeding tube now and is settling into a formula called Elecare, Jr. It's pure gold, because 11 cans of it is $500. That lasts 22 days at his current schedule and has to be pharmacy ordered. Boy are we thankful for WIC that covers 14 cans a month for him!! He also can lift his head when on his tummy and look around. He has gained a lot of strength in just 4 months. He was diagnosed with seizures due to epilepsy but the medications are keeping those pretty mellow now. He takes medication to loosen his spasticity and rigidity and looks much more comfortable than he was before he came home. His smile melts hearts and his eyes attract many kind comments from strangers even. We were blessed with a donated wheelchair/stroller that is very supportive and comfy. He is getting speech, occupational and physical therapy now, and we are learning to understand his "language.". He is a daily delight! Gborlee will be turning 5 in just 2 months! I am amazed by his determination and resiliency. He has progressed so very much since April. He is doing very well with his eye glasses, and looks adorable in them! He scoots everywhere. EVERYWHERE! Since he learned that skill, he hasn't stopped moving! He has few fears anymore, except his walker. I can honestly say he hates it. But, he will step now when we hold his hands, and he giggles because he is so proud of himself. I think he has only gained about 4 pounds, although he eats nearly anything handed to him. He will finger feed himself now, but without being watched the whole time he will launch it in his special catapult way. That can be frustrating in public. He is starting to mimic different sounds we make, can stand on his own for a few seconds, and is just beginning to use his right hand (the palsied one) in play. He will still need a leg brace for strength but I can see him walking soon with assistance. What an exciting time! He has now learned the one finger play for iPad games and he can sign "more" and wave bye-bye. He was diagnosed with schizencephaly where the MRI detected so much brain stunting and grey matter. He is deaf on the left side and his brain had stopped growing in utero. That appears to be the cause of his right sided palsy. He knows love, and gives awesome hugs and kisses. He will accomplish whatever God has in store for him and we will keep encouraging he, and isaiah, along the way! Isabella is in all-day kindergarten now. Wow. As much as I love not having to pick her up at noon, I do miss her chatter. She likes school and is ready for the whole day experience. I really can not believe she will be 6 in february. Those years flew by! Tommy is 8, in second grade and loving it. He has an awesome teacher this year and I know he will continue to thrive. He loves routine. He is opening up more and communicating. He especially loves to answer the phone. Meredith, 9 at christmastime, is more timid than Tommy, but seems to like school so far. I thought she got a tough teacher, but she likes her and it may be more structured than mere likes but the best thing for her. She is already turning into a bit of a preteen, which will be interesting the next few years around here. Next year tom and mere will be going to the elementary school, so they are at the top of the ages brackets at their school this year. Tara, 10 1/2, is a 4th grader now. She got the teacher she dreaded just to find out he may not be so bad after all. We have a wonderful and supportive school system and the kids are doing well. Tara attended a week long choir camp this summer and is excited to be a part of this years' school production of the musical "Annie". My jenni was a part of that play in high school too, so it brings back many memories. Tara is a spit fire, but growing up nicely and whatever she does she wants to do it wholeheartedly. Nelly, 13, is an eight grader in the Jr. Hi. She loves her Kindle and spends a lot of time reading. Her goal is to be on the honor roll again this year. She also wants to grow her hair out really long again, so it will be an exciting year. She babysat this summer for money for school clothes and is excited that she got to pick out things she wanted and pay for them too! I love that attitude! She is kind and loves her friendships. Nicole, a freshman now, will be 15 in november, wants to be involved in everything possible, and hates our limits. She enjoys music the most, so her and nelly both are looking forward to play auditions next week. She loves her friends, and has several favorite teachers. It should be a good year! Tyler is in a new computer based home school class now, and is learning to balance his time with the requirements of the class work. He is a bright student, and we hope taking negative peer pressure away we are giving him an opportunity to thrive academically and refocus on the importance of doing his best. He will be 16 in October, a sophomore, with very little time left in high school and here at home. We know how very fast these years go. We were blessed to spend 2 weeks with our son, Scotty, wife Britt, and the three grandsons,Kaiden, Keegan and Keano in August. They live in Puerto RICO, so we were treated to wonderful home cooked meals and a free place to rest our heads, plus a beuatiful adventure every day in this tropical climate. Got our first taste of what hurricane season is like there and his difficult it is to live in a place where the language is different. We had a great time with them! Soon they will be travelling to meet and bring home their fourth son, Kai,from the Congo, and we are thrilled to be able to welcome another boy into our family! Hurry judge, sign those papers! We are involved in a special home for medically fragile children and will be starting a play group one day a week at their facility in south bend. That will be a huge benefit for both my boys, but also for me as I meet with moms of other special needs kids. We find a lot of strength for our journey by standing together! Africa still holds our hearts. We are pleased to be on the board of a new foster care ministry that is being built for special needs children n Liberia. The need is great, and we hope and pray being involved will alleviate suffering for more children who have no voice. So, my babies are napping, so is mom. The snoring in the monitor is making me as sleepy as if there were someone trying to hypnotise me. I suppose that means I still have an hour to close my eyes... Gee, that would be kinda nice.......zzzzzzzzzzz