Thought I would try and get a newsy note along with pics in on the blog this afternoon :) I feel like I have not shared as much or heard from my bloggy friends as much lately and I dont like it. :( Facebook is great to get to know little snippets in everyone's life and I love it too, but I do miss the blogging and responces that use to come when I did blog more. Course main thing is my prayer is to have this blog printed to keep and I dont want to leave lapses so they wont be there. Course I need about $250 at least at this point to print what is here so far! EEEK! I so want to print it and then after that print like once a year but for now I can't swing that. The boys are doing pretty good. Noah is growing like a weed, well both of the boys are! :) Noah is growing in so many areas not just physically. Talking up a storm! You might not understand everything he says but he will TRY to say Noah version of just about anything he hears! He is definitly still very speech delayed but from MUTE to this is HUGE! I saw a tv show not long ago about this teen boy that everyone in the community was afraid of because he just kinda went around watching and looking and never talked. He was mute. As I watched that episode of the Waltons I had my Noah sleeping on me and I bawled and bawled and my tears fell onto his face as I did. I would have loved him just the same if he never spoke but OHHH how I am thrilled he did! When I am tired and weary and NEED some space and he is on and on and mama this and mama that I REMEMBER how long I waited to hear MAMA from his lips and how thankful I am here can speak! I look at my Jeremiah and I wonder if it will come with him. Some have said he is basically a "vegatable" and will never speak or know anytying, others have said the communication will come by voice, other have said maybe he will communicate by switches. I dont know but for some reason with him it is not as hard as it was with Noah. Maybe because I have been through it before or maybe because with him I am just thankful for BREATHING! His Sunday School class has a point system for particpation, bringing Bible, being on time, offering, etc. Jeremiah was out when in the hospital and someone said that he got pionts and reward anyway since he was in the hospital. I said Jeremiah gets WAAAY extra points for BREATHING! lol Noah is doing so well with his fine motor skills though gross motor are still behind. Kinda odd. Sensory issues are stil a big thing with him and so is his temper and such. He is improving across the board and maturing so much. He is kind, compassionate and caring most of the time! And he will help you with anything, even things he is really not big enough to do but boy he will sure try. He loves it. Jeremiah health wise is having ups and down. We had a few weeks of sleeping almost all the time. Its been a very scary and emotional time. We do think that it has been narrowed down now to how his body processes medicine and even though levels appear only slightly elevated he responds as if they are way elevated. He is having a MRI this coming Friday. The Pediatrician had a fit when she realized that noone has done an MRI on this child and all diagnosis, prognosis, etc had been based on an ultrasound in Taiwan and a ct scan here. So yesterday she decided an MRI is happening. It has been hard lately because therapy is concerned that he is regressing in some areas. PT he is just missed alot being ASLEEP :( which does not help, Feeding therepy he has regressed alot and we are not totally sure why. Some we knew would come with the time on the vent but it is really more than anyone expected. It is like we are starting over again tryin to give him tiny bites of ice water, crushed ice, or tiny bites of baby food. It so hard to just want to give up and not try for oral feeding because he did so enjoy it and eat as best as he could before, so now that he really doesnt want any part of it I am very emotional feeling like I have to give that back to him. I am anxious to see what the MRI shows on him and see if it all changes his critical prognosis. I often can put it in the back of my mind and not think about it but lately it has been brought up so much it is hard. I find myself saying GOD NOT YET alot! Several therapist and pediatrician were suspectiung that this is it, this is the new norm. He is getting worse and just gonna sleep all the time until he is no longer here and I am like NO IT IS NOT. SOMETHING IS WRONG. Not everything is blamed on the cp and brain damage. I did some tests on my own with his medicines. Not changing the dose but changing when he took it. Normally it was at 7 or 8 in am and 7 or 8 in pm. Well he would get meds at 7 ish and therapy at 9, 10, or 11 sleep through. On his bday he had meds at 8 am and was still asleep till 5 pm. Then he was alert and happy till bedtime meds. So I stayed up late this past friday and delayed his meds and PRAYED no problems with them being late. gave them at 1:30 am, so not due till afternoon and he was alert and awake the whole evening until 1:30 am when I gave him meds! HOURS of alert time, to work on rolling and play and even when I put him in his chair and turn on music he did not fall asleep but cood and such. So Sunday night I stayed up late and did the same thing! Gave him meds really really late. Monday we went to therapy and he had one of his best sessions ever! He even pushed himself forward in the gait trainer ON HIS OWN several times! So all week I have been doing that staying up late and giving him meds late so they are not do till afternoon and he has had 3 amazing days of therapy! Went to Pediatrician yesterday and told her about it and she agrees it most likely is medicine , the seizure one is what we think. She called a pharmaceutical doc at picu and he helped give an idea of what we should try and go down to. We lowered the dose by 12 percent starting last night. So tonight I will give meds at normal time and see how alert he is tomorow. Next tuesday they will do blood levels again and see where he falls and we are praying no seizurues or anything from the change. Tomorow we finally see the Pediatric GI. I am VERY VERY VERY NERVOUS and emotional about this appointment. It is at the hospital I SWORE I would NEVER take my kids too and here I am taking him. BUT it is only for consult and we will see what happens. Any tests and procedures they have agreed to do at our hospital and have them sent to them so it is just the day of going there and going through it all to get to him and get the consult. PRAY FOR ME PLEASE. Celeste is dong well. She is dating the Children's Pastor at our Church and they have very similar callings on their life and we can so see how the Lord can use the two of them together. She is very involved in our young adult group at Church and it has been so amazing for her to have this group of friends at the same place in life as she is in. She is working herself to death at her job and I keep praying for better and better for her in that department. I do not see her alot even though she lives here and my heart aches but I am so thrilled she is happy :) Now on to some pics :)
look at that TALL baby boy baring some weight on his legs!!! :) He was dancing with his girlfriend (oops I mean his PT Lisa :)
in the gait trainer workin hard! :)
he looks SOOO BIG in there :)
rolling baby! :) he is trying so hard and helping more and more. he does from time to time roll completely alone. If he can push up on his arms and throw head back then he can do it! LOL
sitting nad lookin at Miss Lisa :)
sitting up ALONE!!!!! he can sit for over 2 minutes. This day I would say he went about 4 or so at least!
LOOK at that face! :)
holding up our head and pushing the vibrating dog :)
Noah is such a sweet big brother :) DONT LOOK at mess in background please!
Noah has stayed in Children's Church about 4 times now! He still cries but if it is one of 2 ladies that we give him too he will eventually calm down! He loves them so much but really still does NOT want to go in without me. We keep taking him though when its the folks he knows and loves because we know he needs Church on his level and I NEED worship again! Its been almost 3 years! This was takin by my friend Erin, the children's Church teacher most Sundays! :) She text it to me this past week when I was home sick and had sent Noah with Celeste :)
waiting for my mom at walmart and being adorably cute :)
Nannie treated us to Red Lobster :) NOAH eating his salad! He did not care for the red cabbage in this one :) LOL
HE LOVES HIS SALAD :)
our latest attempt at potty training FAILED again. This was as GOOD as it got, most of the time it was SCREAMING and kicking. He just really does NOT want to do it and to be honest not sure he can. He could not keep his trainin pants dry for 10 minutes. Soaked after Nap and when wake in am. Maybe his wife will potty train him when he gets married!
NOT happy to be in training pants :(
NOT SURE why this is sideways :( ugggh. But this is NOAH in the swing at the park. Those who have bene around awhile may remember the first time I took him here and put him in this baby swing he FLIPPED OUT! This day he was not thrilled with it but he did not scream and let me swing him a few minutes!
Sideways again! uggh Jeremiah on the other hand LOVED the swing and smiled and coo'd the whole time :)
I know most of the picture is not here but I just LOVE how his eyes are shining with the smile!
soo playful :) I LOVE watching him play and I ADORE when Noah smiles :)
more panda boy smiles :)
Noah's bday party invitation! :) He LOVES trains at this point :) we found a trackless train they will bring and set up for the kids to ride for an hour,. Then cake, ice cream , presents and train pinata :) Will be fun! PRAY for me as I figure out how to make a TRAIN CAKE! eeek!
Thought I would share our school mascot for our Home School! :) If you would like to see our blog for school you can go here: http://trainupachild-dca.blogspot.com/
School Logo :)
Just started the blog and it will be having more and more on it as time goes on. This year we are doing more lapschool than anything. We might do one day a week for april and may. Next year I will probably do preschool 2 or 3 days a week. Though every day is school when you homeschool! :)
Well, all my bloggy friends out there in cyber land! I feel lonesome! Please leave me some commets! I miss yall :)
I am blowing yall kissses in the wind! :)