So Its been almost a month since I posted on this blog so I thought someone out there might like to see what has been goin on at the Sisemore's. Not sure how many still read blog's now adays but I still love reading and posting. I am determined to afford someday to put this all in a book, but since I have a big mouth (well at least with my fingers I do) and post so much there are ALOT of posts on this blog since it began way back when :) Anyway on to February at The Sisemore's :)
This was a skate night "date" with Noah the night before he had surgery. Since we have the nurse now to help with Jeremiah and had hours we were not using with the help of my family we decided thursday evenings would be "date night". The plan is for one night Bobby and I go out and do something and Celeste keeps Noah here with nurse and Miah, and one night Celeste and I go out and Bobby keeps Noah here with nurse and Miah, one night Noah and I go out, or Noah , Daddy and I, or Noah Celeste and I, depends on the activity. Someone is always in the home with Jeremiah and the nurse but my mom can be here but not really do Jeremiah's care, but can know he is being taken care of well. Everyone seems to be enjoying this. The trick has been finding very cheap or free activites to do at night. The skating was good priced and it was a whirlwind of emotions with Noah. You might have to click on it to make it bigger t see all the faces. He was so excited and then he flipped out at the idea of skates, so I thought will I will try and put on one and see how it goes, totally freaked. so off they came and I thought well this is not working out at all. Then we sat down to eat something and daddy reminded him about Caillou ice skating and then Noah wanted skates on. lol We also talked at length during the meal about surgery the next day. He did not seem to understand at all, but at least we tried to prepare him.
Here are some shots from surgery day. Noah was not a happy camper to be taken out of his bed so early! But considering how tired and afraid he was he did amazing. I know the Lord was helping him thanks to all the folks praying!
We were very blessed to be at a Children's Hospital. They called before the surgery because they offer tours to prepare children. But they also know Noah from us living there with Jeremiah that first month, and our trips back since and they agreed that it would be too much for him to know that far in advance So they said they would do something to help him understand better that morning. I was thinking a book, and a book was mentioned but the child life lady came with a little stuffed patient and a kit for Noah to do surgery on his little patient. He really didnt want anything to do with her at first, but by the end he was in her lap! :) I am still no positive he totally understood but everyone did there best to help him to understand and he was such a big boy taking his versed to make him loopy before time to go to surgery.
I thought I was going to collapse when they wheeled him away. He was loopy but still awake and just looked at me with those eyes!! I know he was thinking mama you are not REALLY going to let them take me away are you. I held it together till he could not see me anymore and then lost it. Then pulled myself back together and went back to the room to pray and wait and eat breakfast with my daddy and Jei Jei.
So after the tongue and ear surgery we were to go back for more hearing testing to get the readings they needed for his hearing aids. They dr and audiologist had explained that with permanent hearing damage to the nerve that tube surgery will not help that part, the tube surgery is mainly for a child with so much pressure in the ears to remove that and equalize the pressure so it wont fluctuate and affect the hearing aids ability to work. So when we went back everyone, especially the audiologist and the dr. were excited to discover that Noah does not follow the rules (just like his baby brother, lol) and even thought " tube surgery cannot reverse permanent nerve damage" IT DID! Noah does still have some mild permanent hearing loss caused by damage to the nerve but it is GREATLY improved! The audiologist was shaking her head! I then told her about all his little friends in church praying over him and laying hands on his ears 2 days before his surgery. She was like wow. Funny thing is the newest report on his hearing says that this testing was more accurate and reliable and the first testing was not. LOL I cracked up She insisted in the first testing that he was 100 percent on target reliable everytime she redid a sound he tested at the exact same place. But now that a scientifically unexplainable miracle has happened the first testing was wrong. LOL Oh well, they can believe what they want, but little Noah ran up to a sweet lady he knows at church that night at supper and said , " God fix my ears! That's my boy! He knows!
So then on the 9th was Daddy's bday! He chose to go eat at Genghis Grill and have mongolian food. It was soo yummy! Noah was not very happy at this place at least at the beginning. You have to go through a line and pick out your food you want cooked and put it in your bowl and then at the grill you leave it for them to cook and then they bring to your table. When he had to give that bowl to them, HE FLIPPED OUT! poor baby. He kept screamin I HUNGY! over and over. So I am taking a flailing screaming child back to the table trying to explain over his cries AGAIN that they are cooking your food baby, you are going to eat. He did finally calm down but was not really happy till they indeed brought his supper. Even when Celeste's beau Dallas went and got some of the little fried Chinese noodles, he was still worrying about his supper! But he ate it up soo good once it got there :)
Next came Valentine's day! Great minds think alike and both Celeste and us got Jeremiah the same little valentine's frog! LOL Noah is very into little animals right now so he was thrilled with his monkey from us. We could not find a panda and were sad. Never fear, big sis found one at the store she was at so he got a new panda with a heart too :)
So we had a belated Chinese New year Celebration trying to work around work schedules and such. It was also alot less involved this year that I would have liked but at least we still did it. None of the clothes were new, so many of the traditions of it we could not do this year but we did have a nice chinese homecooked and healthied up meal and enjoy some time together! Noah chose to play mexican train after dinner! LOL So we had Chinese food, Mexican train and had been gifted with a Southern Maid Donut king cake for our dessert! LOL guess we brought all aspects of our family into one night, except no Irish component! heehee
This was just too cute, Noah was watching the wheel chair man the entire time he made some adjustments on Jeremiah's chair and then I find him fixin the chair himself! lol thank goodness his tools were fake!
Just some shots of Jeremiah from the past month! :) He can be the most snuggly little fellow and can be so responsive and cooing and smiling and then he can be so withdrawn. You never know for sure what you will get. You can do the same thing and one day he is bold face laughing and the next its like you aren't there. We just keep trying to expose him to as much fun, stimulation and parts of life as we can. The middle picture is him with a switch the school therapy brings in with them to the house. He can push that button to turn on a tape player attached to it! He does not always do it, but he can do it. It is so exciting. And you see him with a light board they have at the school that they bring for him to use. We have discovered he can see red the best and of course things that are shiny and have alot of light he sees better.
This is a shot from his private therapy one day! He was batting 1000! He actually SAW himself in the mirror and reacted! That is a first!!! :) and he is sitting up and not indian style! This was a first for that too! See how hard he is working to stay up! It looks like his eyes are closed in the picture but he is not asleep. lol
Here are some other shots from therapy days! We are so blessed that he is doing so well and responding to everyone. He really seems to like being 'worked with" :)
Some more therapy shots. See how strong he is getting! And check out how LONG he is. We measured him at the surgeons office this past thursday as best as we can by stretching him out and drawing on the paper and then measuring and he is 35 and half inches tall! and he is 28 lbs! I can't believe he is 3 years and almost 11 months! Do you see him looking at Elmo! He can see elmo most of the time! He responds to him :) That is why his party theme at the park next month is Elmo! I am on the search for that specific elmo toy they have there. It stretches!! You pull the arms and legs on him. Perfect for a little guy with cp who has to be stretched all the time!
Just some faces of Miah one day when he was very responsive :)
and some playful faces of Noah. He is so into having me take all kinds of "camra" with him. LOL he will tell me take my camra! rather than picture! too cute :) one of them we are trying to get him to stick his tongue out.
and here we are having some waiting room fun one day after his surgery! look how he can move that tongue now! He is so enthralled by it now! LOL He still does not stick it out as far as most kids can but it is way improved. I am wondering if he will be able to more and more as he learns how to use it now. I will say that his speech has skirocketed since this surgery! He has vocabulary now we had no clue he had. I think the tongue had a great deal to do with his speech issues. The other night he was here spending time with big sissy while I was at the gym I think, and she went to her room when I got here and Noah wanted to watch a show, I asked him where is the remote and he said, " We turned it off while you were gone to watch Celeste's puter and so its in her chair!" I was like , well ok then! heehee It was not totally clear but he said his version of all those words and I understood them all! My mother is also able to understand him better now so that is good. I am hoping he will continue to improve :)
Here are some shots of Noah working hard in therapy! It amazes me every day how he is learning and doing more and more.
more therapy shots! This boy loves to cook! He is always serving everybody! :) heehee
more waiting room fun! :) in the bottom last pic he is watching the tv on the ceiling! heehee
Just some shots of Noah from this month!! He is so imaginative! :) the tray of rocks is a cake just so you know! :) heehee Oh and he is holding up gifty he got in the mail from his friend Allie! He gets soo excited to get mail, he doesnt care what it is but it makes him feel so special! :)
And a few more of Miah. He scared us Wednesday Night with a really scary seizure and then a few more smaller ones and so we were set to ER to see if there was an infection or something causing breakthrough seizures. You can't always tell when he runs a fever because of his skin doesnt react like ours. He will be having an MRI soon for something to do with his hypthalmus. Anyway they said it could have been his constipation that caused it. They really dont know. We see Neuro in early March in Baton Rouge so anxious to have some questions answered we hope. one of these is him looking at the RED mobile his speech therapy lady from the school made him! :) and one is getting a preop xray. He will be having surgery soon. I will share more about that when we get the dates and all.
Well, hopefully for anyone reading you have enjoyed this picture journal of our February. I know there are a few more days left but thought I would get this done now while I could. Lots going on this week. We have IEP meeting for both boys tuesday. Please be in prayer. Previous meetings have NOT been fun and I am a little apprehensive about all this. I am very thankful that the schools will come in and do things with them here at home so I am trying to not worry too much. And Wednesday is my 2 month measurments day for my journey to a better me! God shook me up and made me realize I am gonna die If I do not get a handle on this soon on dec 29th. So I do measurements each month on the 29th. If you want to follow along and cheer me on along my journey check out my personal journey blog HERE!
Happy February all!