Leah is 18 months!

Gosh time has been flying by! Leah turned 18 months yesterday and she is growing leaps and bounds! I am astonished by her vocabulary and the way she looks at things to figure it out! She says please (peez) to almost anything she wants. She stared about a month ago putting two words together momma peez, no down, she has said bu bye for a long time,and bubba no. Its just amazing how "typical" she is.
She also loves eating! Things like spinach and artichoke dip, grilled salmon, spinach fettuccine alfredo, zucchini, corn and carrots she is going to be/is high maintenance! She does not like hamburgers, breaded chicken, fruit unless its prunes, not to thrilled with any breakfast things either.
She is sassy, really sassy. We have definitely hit the terrible two's early! We can not go anywhere for too long and forget restaurants it's take out for us! She is so busy and such a monkey. Just the other day I turn around from putting dishes in the dishwasher and there's Leah straddling the baby gate, I stood there in totally shock not wanting her to freak out and fall! She has a very short fuse and wants it her way or else!
She is a lover though too! Still to this day every morning she kisses Jonathan and now says "wuv you"! She is always trying to help him sometimes to much. She gives the best hugs and once in awhile she gives the nicest, wettest kisses!
She sleeps like a dream! To bed at 8pm and up between 7 and 8. She also takes some great naps.
We go for her 18 month well baby check up next week and even though she is another skinny mini she is totally healthy, full of life and laughter. I wouldn't want anything any other way!!!

Family cruise 2011

So we were scared that Jonathan wasn't going to be able to make the cruise due to rsv, however with God's hand over him and a lot of prayer he did get to go! W ehad so much fun. My parents,brother, aunt, uncle and grandma went! We flew to ft. Lauderdale, fl and then headed to Miami. We stayed in a beautiful condo that overlooked the ocean, mind you we left 20 degree weather and woke up to 80's! Then we headed to the Keys, I love this place so inviting and fun! The next day we left on the cruise ship, Royal Caribbean to the Bahamas! The first day was a bit hectic trying to get everything situated but after that we settled in and it was smooth sailing, no pun intended!
The best part was getting the kids ready for bed and we would lay Jon on the bed and Leah would "attack" him with kisses, oh I love that so much and so does he!! By the second night I would honestly say about 1/4 of the boat knew Leah by name! She would say "hi" and "bye bye" to everyone including blowing kisses to every other person she met. They had a nightly band and dancing, well little miss Leah had to be center of attention and dance too. She would have crowds coming to see her dance and my little sassafrass had NO shy bone and she can definitely shake it! They also do nightly pictures and I think this might have been Leahs favorite time because after the first night the same photographer would say "Leah do you want your picture taken?" Leah then would say "down" and run over there and start posing!
I think everyone had a blast the only downfall was coming home we had a 4 hour delay and didn't end up getting home till 2am, not fun with kids! We can't wait to do it again next year but next year will be the Disney cruise, YAHOO!

Pneumonia and RSV!!

So we finally got it! RSV is no fun at all. Jon started coughing which wasn't to bad but by the third day he seemed really hot so I took his temp and it was 102, o.k so off to the e.r! I HATE going to the hospital but knew we had to do something since his cough was getting worse and the nebulizer, inhaler, and cough syrup wasn't doing a dang thing! We were up to back to back treatments every 3 hours with no end in sight! So when we go t to the hospital his temp. was 104.9 and coughing so hard. They did the breathing treatments 4 in a row and it seemed to calm the coughing, they started steroids after the x-ray showed pneumonia too. We were admitted and to tell you the truth it was the first time we didn't hear anything about his weight or nothing negative! The dr. was actually the same one we seen in 08' the last time we were in the hospital! She remembered us, not sure if that is a good thing or bad! But she said she would never forget us because of how much she seen the love I had for Jon and wasn't going to give up on try to help him. (If you go back to 08' post of hospital I did a lot of crying) She said she was happy I told her about the cp growth chart and she now uses it and if the child is not losing weight she totally understands that growth is very hard for these children! So we were there for 3 and 1/2 days! We did hbot the next day and then the following day and even though the doctors said he would have the cough for a few weeks it was gone, completely gone after his 2nd treatment! We are also very blessed that even though Leah played with her brother she never came down with it! I truly believe not exposing her to ALL those vaccines has helped her immune system so much!

HBOT video

Here is a video of a mom that did hbot with her daughter! The results are amazing. We have done 80 sessions with Jonathan and would love to do more because yes we also have seen some great results. The sad part is is that its not covered by insurance. It cost roughly $5,000 for 40 sessions! We need help. We want Jonathan to get another 40 sessions. His muscles spasticity has decreased, his speech is coming along, he is so alert and so smart. This therapists comment all the time about just how much this has helped him. As a parent you want to do everything for your child. So we are asking for donations, in any amount! This money will go to another 40 session and if we get more than the $5,000 it will help with other therapies that have helped him, like hippo-therapy (horseback riding), cranial sacral therapy and massage therapy all these things help him but all are out of pocket. So please consider donating.

Having fun

My the time is going by so fast! We are just enjoying life and having so much fun in the process. Leah is 16 months old and is very busy! She talks all. the. time. and I love it!! You can often hear her say hi and bye bye to everyone she has NO shyness to her! She likes to say all done, momma dadda, bubba a lot! Her vocabulary just goes everyday! She knows most of her animals, she knows her body parts especially her bum bum since I tell her she needs to sit on it when she is by her brother!! I love watching her interact with Jonathan. He is really into the pacifier again and when it falls out she says "uh oh" and goes running to put it back in his mouth but not before she puts it in her mouth then says "no" and puts it in his! She cracks us up she is such a crazy funny girl. She is a climber and it scares me so! She is into EVERYTHING and is always going and saying something!

Jonathan has been doing really good! We kicked up his therapy after out HBOT was finished and it seems to be helping. We started feeding and he is doing really good. He can now eat a fruit loop and doesn't gag he chews it pretty nicely! We are working on some great oral exercises that I think are really good for him! The therapist asked Jonathan the other day to put his tongue over here( toward her right then left) he did exactly what she said. He surprises me all the time!
He is doing really good with his power wheelchair we will be taking it home tuesday and using here. We have him using his head to go left and right and of course straight and he totally gets it! Since he is right side dominant with his head sometimes it gets hard for him to look to the left and then he goes in circles but he thinks that is hilarious! Our wheelchair specialist said "before I leave my job all I want to see is my buddy Jon use this wheelchair" well he didn't expect him to do it the first day!! Way to go dude, I love you Jonathan! So he isn't proficient and in no way could he go out on the street just yet but he will get there and he proves that to us with every day he practices!

15 month check up

Leah had her 15 month check up this past week! She was 19 lbs 14ozs and 31 inches. So tall and skinny. the doctor was happy with all her developments and said that most 15 month olds say between 5 and 10 words so she stated that LEahs vocabulary is really taking off! In my opinion she is always "talking" she is so happy when she is doing what she wants! She continues to be sassy, she is a handful if we go out anywhere. So we have decided that quick meals no dining in, its toooooo hard! She is as cute as a button and knows it. She says hi to everyone and when she is ready to leave she states "byeee"! She loves being the center of attention! She also LOVES her bub (Jonathan) she is always doing something to make him laugh! She loves dancing right now she spins and waves her hands in the air and is now trying to jump! She is a great eater and LOVES pasta, bread and cheese! She started swimming lessons and seems to be a natural in the water! She had her first play date with Zoe and Mia, two great little girls. THeir mom and I have actually become good friends. Can't wait for more "dates"!

Developmental Evaluation 2011

SO I stressed and stressed over this appointment. I get so nervous about what Jonathan should be doing and what he is not doing, how he needs to gain more weight and blah blah blah. Well it went far way far better than I could have imagined!

We arrived at the PM&R office and I do LOVE this doctor she is very well educated on cerebral palsy and the different options we have, in regards to spacticty, pain, therapies ect. So at a developmental appointment we see pm&r, dietitian, social worker, p.t, o.t, s.t, orthodics guy psychiatrist and a special education teacher! This appointment lasted 4 loooong hours but I loved it!

First we started with the dietitian and she looked at the blended diet I have Jonathan on and she said" where did you get this recipe"? I said I educated myself and started natural supplements and organic foods(liquids). She said "hmm, well your doing everything right, he gained 2 pounds in 2 months and he has all the necessary vitamins minerals and food groups!" His growth chart looked pretty impressive on the cerebral palsy curve, he was in the 60th percentile for weight and 97th percentage for height! She had nothing to add and told us to keep up the good work!

Next we seen our favorite doctor in the world! She had two interns with her one from Duke hospital and one from Cincinnati Children's hospital! She said to these doctors "We have 5 patients today and of all the patients you see I want you to hear this little boys history!" She went on to tell them about being a preemie then coming home doing everything on target getting the rotovirus vaccine, going blue needing blow by oxygen and then 1.5 months later getting the pertussis vaccine and everything went down from there! SO I even learned something at that appointment, she believes it was a combination of the rotovirus and pertussis vacc. because of the severity of Jonathans condition. The two doctors stood there stunned, I was even stunned that she told the other doctors! They wanted to learn more about Jonathan so we talked for a bit. Then she told them about out "non-conventional" therapies and how well they are working for Jonathan, HBOT(hyperbaric oxygen). She seen Jonathan in November 2010 and he was tight, very tight. We started hbot the end of December and seen her in Jan and she took Jonathan and bent his legs up stood him up and then put him in a squatting position and he used his muscles not tone to lift up and bring his head up!!! The two doctors were amazed and our doctor has said that hbot has worked for some of her kids but not as drastic as it has for Jonathan! She also told them she stands completely behind her prescription for Jonathan to get stem cell treatment! She really believes we would have to do it twice because she has SEEN great results from kids that have completed 2 treatments of stem cells! (Now we just need to continue to pray that we find the right place to go and God will lead us there!)SO for those of you this doctor is an md its not a holistic doctor and she does not recommend these therapies to anyone, she believes Jonathan would greatly benefit from stem cells! The two other doctors in the room were besides themselves for the next few minutes with us, asking million questions about hbot and stem cells, it just proves that doctors "practice" medicine they don't know everything!

Next we seen the social worker, psychiatrist and teacher. They preformed a cognitive test with Jonathan and he had 3 options and then he had to pick the picture they would call out using his eyes and a couple other things. They then had us wait (outside the door)while they talked and then told us to come in and told us that they DO NOT APPROVE the classroom he was in this past fall, they liked the idea of the equipment they had there but did not believe he would reach his potential and grow in that setting! They said that they wanted him to be in a typical preschool and the state will/has approved him an aide just for him! They will take care of his needs. And they have all the specifics written down for his next iep for ex. they want him in a low chair so when its circle time he is at every kids level, they will provide a pony walker or such so he can play in the gym with the kids and ect. I was teary eyed my little man will be like all the reat of the kids! If and only if we want to take Jonathan to the other school to use the hopsa and other equipment the school will provide transportation to the school for a couple hours with the exception that one of the kids in the other classrooms that are verbal can come down and talk with Jonathan!! What a great thing to hear and they WILL put up a nice fight if Jonathans needs are not met! By the way he tested at or above a typical 3 year old!!

Then there was the physical, occupational and speech therapists. We kind of already knew what we need to do in those departments because we have the best therapists! SO they want us to get Jonathan into somewhere that has augmentative communication, which we are through the university when they have an opening this month or next, we need to do more occupational therapy and with physical therapy, Jonathan will start getting kinesio taped on his right upper shoulder, we tried this before and he had a skin reaction so I wanted to try again. Here we are 5 days later with a test tape and no reaction so this will start this tuesday with full taping. They want him to get the theratog and a neck ring. He is going to start trialing a power wheelchair this Thursday! They also want to talk about getting him a kid walk, he did really good in it however they think he would do even better if he is getting taped and has a theratog on! His afo's were still good, poor guy is still in a shoe size 4 w/o afos and with they are only a 5! Grow feet, GROW!!


THIS IS A THERATOG SUIT!


So that sums up the appointment and I couldn't have been happier. EVERYTHING was great and the suggestions were awesome. Can't wait to get started with all the new things he will be trying!

Thanks to everyone that keep my family in prayer, because its working he's listening!!