Good Morning!!!

So we had a busy week last week.... Noah is still doing well. We had to get blood work done because he has bruising all over his body and I was worried. The platelet test came back in the normal range however it was on the lower end of normal. Doctor said this would explain to us the reason why Noah easily bruises. He isn't worried yet about intervening we are just going to keep an eye on it.

On Friday I also got a call from the pulminologist office with good news. Noah's lab work for the allergy panel came back negative on everything...he isnt allergic to dogs, cats, pollen, etc. They said the draw came back that he has no allergies to these things however he can still have a sensitivity to some like pollen.... so that is good news..

UPDATE ON MY KNEE: The Orthopedic found that I have a knee cap that is not tracking right. It is slanted and due to the fact that I also have loose joints and because I have more muscle on the outside of my leg than the inside so the knee cap is being pulled more to the outside. I also have arthritis in the knee and swelling. I have to do PT for four weeks and then I go back to see him. My insurance will only cover two days of PT and then its on my own. But I need to work at it. If the PT doesnt help it then surgery is the next solution... I dont want surgery!

Erik got a piece of metal in his eye this week at work and had to go to the eye doctor Friday to get it removed. He was in a lot of pain friday night after the eye surgery but is doing better now. Last night he was able to drive a little bit and he says its more just aggravated now it doesnt hurt. Im glad that he is feeling better.

Noah has a few doctors appts this week too. Wednesday we head down to Boston again. But this time its for his eye sight. We are having a test done to find out just what his brain comprehends. Im a little nervous about this test. Im worried that maybe I dont really want to know the answer to this. I really am hoping for good news but I dont know if I want more bad news either. All I can do it pray that this time its good rather than bad. We have to do this test in Boston because Maine doesnt do this test with patients with siezures. It should be an interesting day.

Thursday we have an appt with his neurologist here in Maine. Which will be exciting to go to because Noah will finally have successfully come off his Klonopin med as of Tuesday!!! We have been working to get him off this siezure med for about a year now and FINALLY it looks like we will be successful!!!

Well...life is good right now and I hope it stays this way!

Smooth Sailing

Noah is doing well right now... he has gone back to school for the summer program and really seems to be enjoying it. The first day of school for the summer I had to drop something off to him and he was all smiles... The nurse reports that for the most part he is staying awake and very vocal during school. Which is nice to hear!!!

Make a Wish came by last weekend and gave Noah his envelope with what wish they will be granting inside....they are going to be remodeling his bedroom...which is very exciting.... They told us that insurance may pay for the bed so if we let insurance cover the bed they would put money into more of the sensory type stuff he needs... I think we are going that root. Things should start happening with that around September!

Well...I have managed to mess up my knee which has really put a snag in our lives... Im on crutches which is difficult enough but then adding taking care of a non ambulatory child on crutches it is even more difficult. Thank goodness my girls are home and I have such a wonderful guy taking care of me when he is home too. Im going today to the Orthopedist to find out what he thinks. It either hurts when I put pressure on my foot or it pops and hurts when I put pressure on my foot. Had an MRI done last week and they didnt see anything but Im in lots of pain. I think I may have hurt it while exercising this year on the treadmill or in the pool because at first it was just hyperextending when walking and I ignored it because I see enough DR's with Noah and it wasnt a big deal. July 3rd I got up from the dinner table and my knee popped and it killed!!! and Its hurt ever since!!! So Im holding my breath as to what this doctor is going to say but ready to find out what is wrong so I can start the road to getting rid of these darn crutches!!!

Other than that summer is great. Spending most of it with the girls while Noah is in school. Spending time with the puppy who is getting big!!! And its fun to teach him new tricks! Just recently taught "PAW". So cute!!!

Love is in the Air!!!

Welcome Home to Great Grammy & Great Grampa!!! Noah is so excited your here!!! And mommy is too!!! We love you!!!

Pulminologist Appt

Tuesday Noah had a Pulminologist appt. It went ok. The doctor has switched some of Noahs meds and increased some of them to see if this will help. He increased his Zantac dose because he feels that Noah might be refluxing a little which is causing him to asperate. He also increased his Nebulizer treatments to twice a day to see if this helps too. He has decreased his Robinul med (the med that helps with controling his saliva) He did this to see if Noah was drying out to much but told me if he started drooling to much than I could increase back to regular amount. Last night we had to go back to regular amount. The doctor did feel that Noah would be on the oxegyen now for the rest of his life. We kinda new that but it really sucks knowing that there really isnt any hope that he will come off now. Dr. Mellow felt that this was the beginning of a long road ahead. :( But we will hold our heads up high and we will not stop trying to prove these doctors wrong. We will cherish the days we are all together and not give up!!! He is so cute! Lately he is mimicking us... he is laughing out loud and I've even got him to try to say "LaLa" The pediatrician even witness some of this mimicking and told us this was more a 6 month developmental stage.... here Noah is proving Dr's wrong already. He starts Preschool Summer School next week. Mommy is so excited for him because I actually feel that he is ready for this. He will return going 5 days a week. Im so proud of him. We are again trying to get him off one of his siezure meds and (knock on wood) this time seems to be more successful than the two other times we have tried getting him off this med. We are down to only having to give him a half of the Klonopin once at bed time and we started out on 1/2 in the AM and a whole in the PM... he will stay on this dose for 2 weeks (1/2 in the PM) and then he is off the medicince!!! One siezure med gone (crossing fingers) he is so much more alert since this change and doing so well. LEts hope it works this time! We had a Graduation Party for Noah last weekend and it turned out to be a wonderful day. We had great weather and lots of family and friends show up to celebrate such a wonderful accomplishment.

Progress

Noah is doing better we still have tough days but there is more good days than bad again. I think alot of it is allergies now. The scariest things right now are the mucus plugs that he keeps getting... he cant breathe thru them and all u can do is try to help and wait for them to pass. We've had to call the ambulance twice now because his 02 stats drop and he turns color on us. We have a pulminology appt on June 26th and hopefully the specialist can help us with this issue. I hope so I panick everytime..siezures are one thing to handle but when your baby stops being able to breathe its horrible!!! I didnt think it could get worse than the siezures...I was so wrong!!! On a lighter note... Noah graduated Preschool June 8th. It was such a wonderful day. So nice to be able to celebrate such an accomplishment for him!! He was so cute in his cap and gown and stayed awake for the whole ceremony!!! His last day of preschool was June 12th and then he begins his summer school on July 5th!!! Then in Sept he starts KINDERGARDEN!!! Wow where does the time go?

Still on life support

So Noah is still on life support...they were able to take him off the EEG this morning because his siezures have stopped and he is back to baseline siezure-wise.... They were going to try to remove the life support today but decided against it. They decided that they wanted to make sure his stomach surgery from 2008 was still intact before removing. They also wanted to give him a med that would help with swelling in his throat from removing the tube on Wednesday and having to replace the tube.....and they wanted to give him lasix to help with the water retention that he is having...the plan if all goes well is to try tomorrow morning if all goes well... They also want to try to lower the stats on the respirator and make Noah do more of the work today. They are being very careful so that the next time they remove the tube it doesnt have to go back in. They are unable to lower the stats yet because while in for his test he woke up and began to struggle a little bit with the tube being down his throat so they had to sedate him more than they usually have too... The test showed that his stomach surgery is still intact and doing well... So now it is just a waiting game.........crossing fingers for tomorrow!!!

On Life Support at MMC

So we tried to get Noah off Life Support today and he wasnt able to stay off they had to put him back on...he was breathing to fast and had to much salivia and wasnt protecting his airway....will try in another couple days but will be on life support a few more days.... DR thinks this isnt permanent but it could take anywhere from a couple of days to a couple weeks for his lungs to be strong enough :(