here is the update

I am getting so excited For Christmas! We debated putting up our tree, at the time I was just feeling a little bit humbuggish....I am so glad we did, I am now filled with the Christmas spirit.

Finals are finished! I am so proud of myself for finishing my first semester. Woohoo! Only four more to go...

So here is the part I have been putting off, and trying to dodge. It's a tough topic for me to discuss so perhaps it's just better to write it and not have to tell everyone individually. Though it may not seeem to be a big deal to some, keep in mind that if it were your child you may feel the same way.

A few weeks ago we went to a follow up with J's lung doctor. She had some great concerns about Jonah and his development. Jonah does display some signs of being autistic, though he is NOT autistic...he has been placed on the spectrum due to so many similarities with Autistic children. Examples being, banging his head, sensory intergration problems, high pitched squeal, clapping, hand flapping,and finally not talking. (though he does do some babbling) I have known for a while that something was not right with Jonah, but nothing could prepare you for a doctor, a doctor whome you have grown to love and trust tells you this, "I think Jonah may have suffered some brain damage, for lack of a better term" My heart fell right onto the floor, along with any hopes I had for Jonah. She explained herself "Jonah almost died, they wanted to withdrawl all support from him Jessica, when a child is that sick and has CO2 levels as high as 200-205 you don't leave that state without any problems, Most children I have seen who have been that close to death do have brain development issues. I feel this is the case with Jonah. I think it's time to meet with a neurologist."

I waited a few days, I cried a few days, then I called and set up an appointment. I was schedualed for some time in January. My good friend/nurse at our FP dr called in a rescedualed it for December 14th (Monday)I was so ready to call the whole thing off. I am at this point so overwhelmed. I talked to a friend and decided it needs to be done. Jonah and I went up to the hospital and met with the doctor. Jonah was so well behaved I was affraid the doctor would not be able to see what Jonah ndoes or how he acts...I was so surprised. The doctor told me he definatley thinks there is something going on and would like Jonah to have an MRI of his brain. He said that what the lung doctor had said makes perfect sense. He also felt that Jonah was showing signs of ADD, but said accurate testing cannot be performed this young and when J starts school he should be tested. The doctor said some stuff that just left me feeling empty, he spoke of long term whether or not Jonah would be able to live independently or not, whether or not he has some strange disease called "storage disease. He left the room to make a follow up apointment and my head was spinning! I could have just lost it, but I didn't. I picked up Jonah brought him to the window that looked over the Salt Lake Valley, sat him on the window seal and just held him tight. I came to this reasoning, (as Jonah continuosly banged his head against the glass) I cannot change Jonah, He is who he is. All I can do is Love him and make sure he is given an equal chance in life. No matter what I will always fight for him and make sure he is getting all support that he will need to live a real life. After I made that commitment this all seemed so much more doable. Im not saying it's easy, it's not. Im not sayingh my heart is healed, it's not. Im saying that I know as a family we will make it through. With all of the support I have I will make it through.

Pleasee re-post

This is so wonderful. I am reposting it. If you or any one you know might be interested please submit them to this web site

I am giving away a free shoot to a family/person who really needs it. It will be a regular shoot, plus 20 photos at high resolution on a CD. This will be going to a family in need and who you think deserves it above anyone else. If you have a candidate for this shoot email me (littlemischiefsstudios@yahoo.com) why you think that they deserve this shoot and on January 17 2010 I will be announcing the winner. This is for anyone in the entire state of Utah. Please try to think about someone who may really need this.

littlemischiefsstudios.com
littlemislchiefsstudios.blogspot.com

becky

just a quick note

I know I have not posted in a while. To much is going on with some new information we have received regarding Jonah. I am just waiting to get some stuff in order and my emotions tamed before I really get into all of it. My plate has runeth over!

I did however want to share some pics that my best friend took of the kiddos and our family. She is by far the best photographer I have ever gone to. She has done all of our photos since we had children. Follow the LINK and see the cuteness! Becky and I have been friends since our journey in Utah began. I love her and her family as if they were my family. I am so proud of her as this is her dream. To be a fabulous photographer who captures the innocence.

* Just a quick plug...she is using her talents to bless a family who would enjoy the benefits of a free photo shoot of their family. If you know of a family or you are the family, who has been through alot, submit your nomination to Little mischiefs studios.

Just a quick side note... My address book has gone MIA, I need addresses to send out Christmas cards...Email them to me if you would. I would also love the addresses of some of our new friends!! Thanks every one! Jesscaandrews@yahoo.com
~Remember there is no "i" in the jessica part~

follow up with the doc

So today Jonah and I went to see the doctor. I was a little nervous of what she'd say knowing all about Fridays trip to the ER. I was afraid she would listen to him and decide it would be best for him to be admitted. Luckily she didn't say that. She had agreed that he sounded bad, but reassured me she has heard him sound much worse. She was a little taken back on how much oxygen he was using, so like a good doc would do, she studied how he was inhaling and exhaling and came up with this... More steroids. Ha ha, I can only laugh because I have developed this bizarre sick sense of humor you can only get by being stressed to the max and sleep deprived and by being Jonah's mommy. So yes, he is now using Prednisone (Oral steroid) and an inhaled nasal steroid that will coat the inner part of his nose in hopes the O2 will flow better. She felt very strongly that his O2 was being blocked by all the snot and that's why his need for oxygen was so increased. I agreed.


I

No ambulance... I'll drive!

I am so tired of Jonah being in respiratory limbo. He had started a little cough on Tuesday, I really paid no attention hoping that it would pass. On Thanksgiving he was sounding a little worse but it was Thanksgiving and I really didn't want to bother his pulmonary doctor, so I began treatments timing 3-4 hours apart. We made it through our Thanksgiving feast (that I cooked, I might add) and when we got home Jonah was just a hot mess! He was sating low, playing magical tricks with his lips...one minute they're pink the next they're blue...AHHH! I just worry so much about him. Yes I should have brought him to the Er last night but I didn't in hopes that with time he would do a U-turn. Today has been hard. So hard in fact I cried real tears when I heard him waking up from his trazadone induced nap.

He is sick. I took him to the insta care in hopes they would throw some magical fairy dust on him and send us home. No. Didn't happen quite like that. I brought him in. We sat in the completely empty waiting room and waited and waited (no one else was even in the building...just us and the staff) I think the doc was out for lunch...he must have been because we ended up with a PA... normally I wouldn't care but I knew this poor PA was way over his head once he saw Jonah's sat levels... He was kind enough to give me the option to drive J myself or he could call me an ambulance. NO AMBULANCE! I drove him. On my way up to PCMC (children's Hosp) i called his pulmonary doc to let her know I was going up to the hospital, and to get her on my side because I knew the Dr's there would want to admit him.

Okay so long story short we were there in the ER for close to 5 hours. Jonah was using 4X the amount of O2 he is usually on. He was not impressing anyone with his mighty ability to be breathing so hard we could count his ribs. We did the usual: Chest X-ray, deep suctioning, respiratory panel and then his nice 45 min nebulizing cocktail.

The Attending Doc came in told me he thinks J should stay for observation, but that I was free to go if I chose to because He talked with the pumonoloist and she feels that J would be fine, knowing of all the equipment I have here at home. (seriously I have a mini respiratory/feeding clinic going on here) So I left with 2 prescriptions in hand...You guessed it the kid is back on steroids. What do you do. You roll with the punches and have a whole lotta trust and lot more brain power to question what may need to be questioned.

may tomorrow be better, good night.

So Much to be Thankful For

When Jonah was first sick I remember feeling like something was taken from me. I was upset at the world, at myself, at my husband, at my work, at the doctors, just anyone who ever was in my life. I was hurt and I was sad.

I didn't know nor could I ever imagine the blessings that were in store for my future. Today I can say that I am greatful, truley greatful for these things:

My family, we may not have it all together, but together we have it all!

My knowledge and faith that my Family will be together forever

My beautiful husband

My free spirit Morgan and my sweet boy Jonah

Being able to stay at home with my kiddos, a place where I know that I belong

Feeding tubes, life suport, blood donors, pulsox machines, portable oxygen, walkers, suction machines, nebulizers and 6 different medications that keep my boy going! Because it's Thanksgiving I will also be thankful to PREDNISONE...however not thankful for the moon face, and stunting of growth.

The wonderful friends that I have...new & old I will always cherish you

All of the warm prayers that are sent to my family, they do reach us...ten fold

BLOGGING! How I ever function before, will continue to be one of my mysteries...

My health, I have been sick once since Jonah came along...that is truely a mighty miracle

Sun Flower Market...another one of my mysteries... I heart you!

All of those special kids who yank at my heart strings, who help me be the best mommy I can be, who show and teach me daily how to be strong...Thank you to all the bloggers who share their child's story and who open their hearts to Jonah

I am so greatful for Jonahs team of medical peeps who continue to take care of him even though he's a tough case, and his moms a nut case

I am Thankful for each day I have to spend with the 3 most important people in my life. I am thankful for the smiles, the songs, the stories, the faces, the love.

I have so much to be greatful for. Each day my gratitude grows as my eyes are opened to how much I have.

Happy Thanksgiving!

Jonah & his new walker

Jonah and I headed up to the children's with special needs building this morning. We met with an angel. I'm not even kidding. Terri was fabulous! We spent a good 3 hours up there and learned so much. I had the chance to talk with a psychologist about Jonah's behavior. While we were there J was fitted for a helmet and got his new little feeding chair sized to suit him. I will write up a letter this week to have the Dr & OT sign and hopefully Jonah will be approved for his protective helmet. There was one there that we tried on J's head but it was an inch to small. I saw what it does and how it should fit...funny thing is Jonah didn't even mind wearing it. it was so snug I think it felt good smugging up his cute little head. This might be a blessing in disguise! The Angel Terry and I chatted for quite some time and I had a chance to really have a lot of my questions answered. She asked me about Jonahs walking (a sore topic for me to discuss) well, she mentioned a walker. Right away I slammed the idea. I told her there was no way he could do anything like that. Lets try it she said. we tried it and tears filled my eyes.





Jonah was walking!

To see my sweet little boy holding on to this medal chair and moving his feet and body to get to me, aw, it was just amazing! He has been using his walker all day long. He loves it. This is what he needed. I am so thankful for this foundation. I am so thankful for the friend who told me about it.

new post

Today strated early, or yesterday never ended...I'm not sure. I just know my feet are killing me, my bed is calling me, it's 11:15 at night and I am still waiting for laundry to finish. And then...finally...GO TO SLEEP. I hope Jonah didn't here me type that! Heaven knows as soon as I fall into my nice warm bed Jonah decides it's probably time to let out a heart wrenching squeal! And from there...Well, I'm to tired to even think about how tonight will go.

We have had a more then difficult weekend. Not all bad, On Friday we were invited to go to a birthday for the sweetest little guy,Jaxson . It was fun, and I am assuming the kids had fun as well, however Jonah did not miss the opportunity to show off his head banging and the squeal. None the less it was a fun night, and I was slightly liberated by taking him out of the house. I felt so unbelievably normal there at the party. There were a few kiddos on oxygen as well. No one stared or made comments. It was just amazing being in the presence of so many other kiddos who have fought just as hard as Jonah to stay alive.

Saturday was hard.

Sunday Jonah was hooked up to his polsox most of the day. His Sat's were in the low 80's not on oxygen and when he was put back on O's he was sating at 93 on a liter and a half. That's a lot of oxygen for Jonah and not be sating in the higher 90's was kind of bothersome. Today he has been full of mucus. I wish he would just know that the tickle in his throat means to cough. Ah, what to do....

This morning Jonah had his Six month eval/renewal with Early Intervention. His OT went over his results from the testing from last week. Results:
Gross Motor- 11 mo, Fine Motor-18 mo, Cognitive Development- 15 mo
Language-10 mo Self Help- 12mo, and Social Emotional-24 mo.

I'm not sure why this is so hard for me to look at. I thought I was officially out of denial. I would think that by being with him every second of the day I would know just the same as some test, but still it's hard to look at on paper, and for others to look at and know that Jonah is not normal. It hurts. I can't let it get in the way of our day to day life. I do understand that these tests need to be done.

Tomorrow Jonah and I will be going to a place here in Utah who carries equipment for children with those special needs. Jonah will be fitted for a helmet and we will be taking home a feeding chair. I am looking forward to the chair! I will post pics as soon as he is measured for it and it is all set up.

Jonah has been banging his head so much! It started about a year ago. Jonah would bang his head for what they call "input." ( he has difficulties getting enough stimulation) He has some sensory issues that we work on daily. About 4 months ago the head banging got more and more aggressive. Where he is leaving bruises on his head. He does it harder when he is throwing a fit, mostly because he can not communicate that of what he wants. It is super stressful...for both of us! I bought him a skate board helmet in hopes that it would solve the problem...NOPE! He found a way to make it slip off. So this new helmet should be exactly what he needs. I guess we will just have to see.

Can I get a whoot whoot?

Drum roll please...

Jonah just got his first shot of Synagis!! We had his happy birthday well child check and it went great! For the First time since all this medical stuff started Jonah is on the chart!! His head circumference just makes it, but I am so happy his head is finally growing!(perhaps it is just swollen from all the head banging) He is now 30 in in height and weighs 23 lbs He has gained 2 lbs in the past 6 months. though he has not hit the charts on the last 2 he IS growing!

Jonah's OT came over today for developmental testing...though we will not get those results till next week I was so surprised how much Jonah can do now, compared to six moths ago when we did the same tests. She suspects that he is now more on the 12-18 month old side of things but he is still at a 10-12 month level for Gross motor.

Morgan is doing so well at preschool. she is starting to "write" her name. She can make a really good 'M', 'o' & 'a' I am very proud of her. We do 5 worksheets a day that focus on drawing lines, shapes, opposites, & same and different. She struggles with letter recognition but I am trying new things everyday to help her with that.

Ugh, got to go , Jonah has gotten into the dog food...Again!

Prayers are really answered!

I could cry right now. I have been on this blog stalking, googling craze and face book frenzies for so long just looking for another child who may be dealing with similar issues as Jonah. I was starting to just deal with the fact that he may be all alone in this disease. It has been very heart tearing.
Last night as I went through my one hour of all things listed above, I decided to check on a forum that I have not been on in a long while. I went through a few messages and topics then I found one that read:

Hi there! I am joining this group because my 5 year old son has been diagnosed with bronchiectasis, a complication as a result of a nasty adenovirus pneumonia when he was a year old. Anyway, it's good to meet others!

And the heavens opened, AHHHHHHHHHHH!

I am so happy to know that there is another child who has this and is living. I have sent some correspondence to this mama and am very excited about learning more about her child. It was so crazy how much her son and Jonah have in common. When I was reading her boys story I got chills at some of the similarities between the two!