Today was FUN Clinic day. Jonah and I were running behind due to the snow this morning. I hate being late! When we arived I ripped Jonah from his car seat and I ran down the parking garage with a bag of oxygen on my shoulder, a walker in my hand and Jonahs new helmet hitting me in the face as I tryed not to drop Jonah during my what seemed to be a new olympic event...making it to his appointment on time. A couple people asked if they could help me, and yes I would have loved there help, but they didn't look like olympic runners, so I offered a Thanks, but no thanks, and sprinted down the hospital hall to our destination.

And for what? We were the first appointment, and still ended up waiting 15 min before being called back. Oh the joys, of being me.

So once in Jonah was weighed and weighed in at 23 lbs even. Not good. He has lost some weight which I had already suspected due to the way his cloth diapers were so nicely fitting. BUT...and it's a big Butt (not mine mind you) Jonah is Still on the chart for weight!( he was in the 5%) So now his head has made the chart at 3% and his weight at 3% Heighth? Well that's another story. However the dr did bring up the possibility of Jonah receiving growth hormones, and I'm not sure where I sit on the fence with that. I need to get better educated but as for now i'm thinking no way. Who knows, I may change my mind. We have a while until a decission needs to be made.

Feeds: As of a few hours ago Jonah was being tube fed infant formula at 2 years old. Wierd I know, but reminder Jonah is a steroid kiddo and was extreamly overweight because of them, so we kept him on infant formula so that he would "maintain" weight. The diatition wants to start giving Jonah pediasure because he is now loosing weight, and she would like for him to "maintain" his previous weight. So the fun begins. We will now start to weigh him every month and play it all by ear. I have high hopes that Jonah will start to eat more and more, and we will be able to kiss feeding tubes & pumps away.

I need Chocolate

This morning I took J up to the Children with special health care needs building. We are now frequent visitors up there. So much stuff to rule out or except as a disability. I really like all the medical people that we have met with. It is a great place and I highly recommend it to other families who may have a child with special needs. Jonah was SO well behaved! He went and played with our friend Terry (who is a PT, not his though) She did an assessment on Jonah, one that he gets through PCMC and early intervention (DDI) So I ws not at all surprised at the results he had gotten. Same ole same ole. he is about developmentally at the age of 15 months, like I said no big surprise. We met with a Dr that I have been really anxious to meet with. Dr Winters. I have heard about her, both good and not terrible, but I thought (wishful thinking) she would hold the answers to fixing Jonah developmentally...no such luck...darn! She was very nice and super intelligent. She spoke to me and not over me. She observed, bonded and held Jonah. I thought for sure this is the DR for him! then I learned she no longer has a private practice and works solely for the place we were at...bummer! Any who it was a great appointment and Jonah will go back in 6 months for another eval.

I got 2 letters from other specialists that we have seen most recently. The words they write on paper, the truth about your child, it hurts. kind of put me in a bummer mood.

Finally!

Jonah got his helmet today! We have been waiting and waiting! Finally we got a call back that his helmet was in...
So, we showed up at 4:00pm to get it fitted for him. Of course it didn't fit! that would make life to easy, and as those of you who have a special needs child you recognize nothing is ever easy! So after waiting and waiting some more the Mr who was helping Jonah came back in with the helmet and it was stuffed full of padding. He put it on Jonah and Jonah just flipped out. This was not going to work. He then came back in with two different helmets. One looked like a swimmers cap and the other was super bright and kiddo friendly. He placed it on Jonah's head and tightened it, then Velcro the strap under his chin. It fit like a glove! It was meant to be his! Much time hadn't passed before Jonah was banging his head on the corner of the wall (seeking input)as hard as he could. I guess he had to check out the helmet, making sure we were getting our money's worth. So we signed some papers and left. Of course Jonah doesn't like to wear it, so I am trying to keep him distracted from the thought of something touching his head. I am hoping to have him wear it for at least 12 hours for the next few days to get used to it. Then I will reevaluate.

PS fellow Utahan's did you catch the front page of the Deseret Newspaper? RSV! I wish some one would have interviewed me about the long lasting affects!

My Little Mo

I am loving the new look of my blog! Seriously though, it took me sooo long to get it to a style that is fitting to me with a touch of my Jman's style. But I'm still not done... I want a button for Jonah! I will keep working on it and see what I can come up with.

Just had to post this beautiful picture of my sweet Morgan. It makes me smile when ever I look at it. She is just so whimsical and so much her own person. It's hard to believe that in a few short weeks my little girl is going to be four. Where does the time go?

I'll keep it short!

Jonah is finally doing better, though respiratory wise I can still see his chest rise and fall with each breath. (but he his handling his feeds better and staying hydrated) Yesterday was his last dose of this steroid burst. I hope that with the storm brewing it will clean out some of this air, and he will have an uneventful week. Although I do have to say that this last week was so refreshing. We only went to one Dr appointment and other then that he was able to be left alone, and be sick with a yucky virus. Sleep is a powerful healing tool!

Morgan and I had a wonderful day together, as Isaac stayed home with Jonah. We went and ran many errands, she is such a great helper. She was invited to a birthday part that was so much fun! I love seeing her with her friends. Awe, to be young again.

I wanna talk about Me, wanna talk about I...

I have lost 17 lbs! I am so proud of myself. At times I feel like I am undefeatable...then I walk into Target and see the aisle & aisles of Easter candy. Oh how I love me some Easter candy! I broke down... Temptation stole my soul. 3 long weeks with hardly any sugar, and I chose today to have my chocolate melt down. However I did enjoy it, with minimum guilt, and I will try to stay out of those kinds of stores and stick to my, SF Farmers Market and Whole Foods, where I am rarely tempted to indulge into carob, or sesame crisps. Okay, just had to get that off my chest...and now off my hips!

I hope you are all doing well. I have been doing some deep soul searching. I have had a lot of down time while dealing with Jonah's newest illness (seems like it will never end) but I have been thinking a lot about what is important. As you know I have been going back to school. I decided to go back to school because I wanted to be a child life specialist. It kind of runs parallel to my back ground in early childhood development. But... I have changed my mind. I have decided that I would be really good at helping parents. I want to be able to help other parents who might be going through the same kinds of things that Isaac and I went through, and felt alone. The Dr's and the social worker just didn't get it. It's only through this blogging world that I have met some of the finest most inspirational people. Some who are fighting the same disease that Jonah struggles with, and many parents who are fighting just as hard as I am to keep their babies from going down hill. No one has the same exact thing as the other, but we all bring something to the table.

Through this 2 year journey with Jonah, I sure have come a long way. I have to laugh. I was so new at it all, I was in so much denial that this was really happening to my boy. I would depend on wishful thinking (OK, I still do) I would have so much faith that the doctors would heal Jonah, that this was all just a little virus that he would soon wake up from.I just didn't get it.

Well, now I get it! And I want to be there for newbies. I have done so much research on where to go for this service and that service. I'm not sure why these programs are not better advertised. It's sad when I know more about them then the Dr's or therapists. Luckily I have been able to rub elbows with some of the best out here in utah, thanks to my late friend Diana. I think she was gearing me up for this task before she passed away last May. Even while being traked, she would mouth a conversation about all of this therapy and special needs places and yaa yada yada. She was dying, and was still trying to teach me. In all honesty I didn't understand why this was so important to her. I wasn't there yet. I just wanted to spend the last days of her life sharing memories. Now I am there, and I see the importance of it all. I see why she worked so hard for parents like me, parents who never met the "behind the scenes" people.

A month ago I got a letter in the mail from one of our peeps up at the Children with special health care needs building, asking for me to write a letter to our state in hopes to save these programs. If you live in Utah I encourage you too to write a letter. These programs are so important to our children. Could you imagine where your child would be with out early intervention or DDI? I Can't even tell you how much of a blessing Jonah's walker and feeding chair have been to us. So... If you have a minute please write to the state of Utah. I will post the link asap.

Hohum

We have just returned from the Dr's office. We had quite a night to say the least. Jonah's temp reached 103.2 and his heart rate was pretty high as well. With the high heart rate came desating which is never good, so we cranked the O's up and I sat there in his room and watched the numbers on the pulsox. This is enough to drive anyone mad. But I was truly concerned that it would be yet another trip up the ER where I didn't want to go in the middle of the night. Jonah slept for a bit but was struggling. Finally around 2am I just brought him into bed with me . I woke up at 4am to find my shirt wet. Jonah's fever was finally breaking. *sigh of relief*

This morning he woke up dry again, no big surprise there. The nurse called me and wanted me to bring him in as soon as he had a wet diaper so she could check to see if perhaps he had a UTI. Minutes later he filled that diaper!! *woohoo* I called her back and told her we were on our way. She checked his diaper and it was negative for a UTI. I'm not sure what is going on with him. I will just keep him on his feeding pump and run lots of pedialyte through him.

I just laid him down and all I can hear is crying, while breaking, to let out a good cough. I just hope he will make it through today with out any more medical trips.

Answers: He has been running low grade temps for 4 days, last night was the first time it was that high. No one even checked his ears, & when we went to the ER NO tests were even ran, they just went by his mouth being wet, and crying tears (which does make sense for dehydration) I'm not sure why they did not do anything else. I don't even think they touched him, oh wait they did only to reconfirm to me that his breathing sounds bad and he was wheezing. Jonah is on antibiotics. However he only takes them M,W, & F. Jonah's base line for oxygen is .5 Lt in the day and goes up to 1 Lt at night. Last night he went up to 2. Maybe now that it's Monday and he has gotten his first dose of the week of antibiotics he will turn around. His Dr is concerned that he might have a bowel obstruction. I just wanted to take him home and see if one more day will make a difference. I now have a solid game plan of nursing him back to semi good health.

Thank you Lacy and Melissa for your input! It is much appreciated.

I get 3 valentines!

I am lucky enough to have 3 Valentines, This guy is one of them! My heart is so full of love this Valentines day. It's just another day that remendes me how lucky I am to have such a wonderful family. I have a good husband, and 2 amazing children. I love being a wife and I adore being a mommy.

Jonah News: Jonah is still sick. I was hoping it was all coming to a head but no such luck, as today he is holding a temp at 101.5 and is having many more "episodes" of the stuff listed in my previous post. Today he is looking pale and is needing increased O2 needs. It looks like we will be making an appearence at the doc's tomorrow. Poor guy, I wish I could just give him some sort of a break. It's a gamble tking him up to the ER or into the doctors office. There is so much stuff going around, and that's usually where it is picked up.

Please if you have any advise let me know. I hope you all have a Happy Valentines Day!

4 ER visits and It's only February!

Have I told you lately how much I cannot stand the emergency room at PCMC.

True story:

First, who did not cross their fingers? Jonah has been sick. Very sick. First with something respiratory, he is now back on steroids. (I think he is on steroids more then he is off of them) but today his work of breathing is almost invisible. He is still wheezing though, but that's pretty typical for this kiddo. On Wednesday, Jonah continued to have a temp, but then it progressed into retching (J has a Nissan so he is not suppose to be able to pass stuff back through), by Thursday morning my entire house smelt of bum...Gross, I know, I was there! I went through 23 disposable diapers! (I was not going to be using cloth for this mess!) I threw away 4 onsies before I realized I would rather have him pull out his feeding tube then to pull one more poopy onsie over his head . He was a good boy and didn't even try to pull his G tube out, just spun it a few times in a circle, and was kind enough to let Morgan have a turn to spin the feeding button. Gross, I know... I was there!) Then, more retching, which means more venting, And I'm sorry this one is super gross, If I did not vent him fast enough, the whole that was drilled into him to put the feeding tube in started gushing the throw up out. Gross, I know I was there! When Isaac got home, I took a much needed break. I left J home with Isaac for a bit. An hour or so later I get the phone call that Jonah has thrown up all over our bed and I quote "Its gross" luckily I wasn't there!

When I did get home I saw that he had gone through even more diapers and a full tube off "butt paste" Wow! It just kept going all night! FINALLY, yesterday around 8 am he had his last blow out, and was doing much better. 6 pm I was getting his meds out and pushing them through his tube, hooking up his vest and then I realized that I hadn't changed his diaper all day. I squished it and it was bone dry. I gave him a bolus feed and still no urine...I did what any medical mom would do and went to the computer to google it, then called our nurse to get her thoughts...she said to give it a few more hours, but to give him more liquids through his tube. I gave him another 5 Oz. by 9:00pm he was still dry, I called my fave medical mom Melissa who I know just had a similar experience with her little Josh, but then she reminded me that Josh never was sick, Jonah is sick, and had lots and lots of poopies, so I called Susie the nurse, and took her & Melissa's advice and went up to PCMC...

I walked into the waiting room that You could have mistaken for a bar, with the smells of Alcohol, and cigarettes, ooh how I cant stand the rude people who do not respect the 20 ft rule! anyways I go and check in and the nurse said that there is a 3-4 hour wait to even get into a room. I looked back to see all of the kiddos who were coughing, and laying there lifeless. I told the nurse what was going on, and by this time he had been dry for almost 16 hours, she could see that he was on oxygen, and breathing hard, and she said to just have a seat...I turned to find a seat and there wasn't one to be had, I then told her that I didn't think I had enough O2 to last 3-4 hours, she said "well, when you run out I will just have to bring out a new one for you." Grrrrr! I was mad. I took a chair and dragged it out, next to the hallway. A Man who must have been sticking out the waiting room with alcohol stink, came over to me and started telling me how cute it was that Jonah had to wear oxygen. I wanted to scream its not a fashion accessory, I wonder how cute he thinks Jonah's collapsed lungs are, or how cute his mucus cough is. Hmm I should have asked. That was just a piece of last nights ER visit. By 11:30, Jonah had a spot of urine in his diaper, It was good enough for me. I went up to the front desk and told them that I would be leaving. I signed a paper and took in the biggest breath ever when I hit that fresh cold, non recycled air. I don't mean to sound rude, but I felt like PCMC had turned into some sort of freekshow, of adults. I was so uncomfortable.

This morning Jonah once again woke up dry. So... I was a bit more worried, and thought perhaps I should have stayed to have a Dr check Jonah out. By now it had been 24 hours and 1 barley wet diaper. I took him back up, and was seen right away. No waiting! when the resident Dr came in he looked at Jonah and said "well, he looks OK to me." That's great Mr resident, but the kid has not peed in over 12 hours. HELLO am I talking to the wall???? okay, I didn't say that, but he must have sensed my irritability and had another resident come in, ah, I liked her, she listened, and responded to questions...a bit refreshing. Jonah finally peed and then the attending doc came in and said well, he looks great and peed a ton, (and by ton she means .75 Oz even though I have given him over 30 Oz in the past 16 hours)and he is very active, she thinks he will be fine to go home, just keep doing what I'm doing. THANK YOU! THANK YOU FOR NOTHING! BYE BYE, I just don't get the over casualness of the whole thing. Maybe I'm over reacting, but when it's you kiddo things are so different. I think its part of the curse of having to deal with the medical world so much.

Cross your fingers

Today was a great day, Morgan, Jonah and I decided to escape to the aquarium since our season passes are about to expire. We were there for nearly 2 hours. usually it is a 30-45 minute outing, but now that jonah is walking he has a new world to discover. Morgan is loving that her little brother is walking too. I think she wishes he would walk faster though. We met up with a friend and her son and just had a good time. Jonah even got to feel a stingray! As I was giving the kids a 7 minute warning that we would soon be leaving I picked up Jonah and the heat from his face was heating my shoulder. UGGGG!

By the time we got home, Jonah was passed out in the back seat. I carried him into the house and laid him down. The boy slept for 3 hours! I knew why, of course...he was sick! I took his temp a little after he woke up. 102.4 I offered food, he wouldn't take it. Times like this I am grateful for his feeding tube. as soon as he got some "food" in him his energy started to emerge. he had dinner, then a bath and I retook his temp and it was still holding strong at 102 His lungs still sounded pretty good for Jonah lungs, so Im not too worried. Tomorrow I will up his treatments to 4 times a day and keep my fingers crossed that this does not turn into anything respiratory.

it's just to calm around here

I am sick. my lungs feel weak, and almost impossible for me to take deep breaths without going into pain that I can not even explain, followed by pain in my throat. Yuck, not fun, but yes I'm still functional. If I have learned anything from my Jonah, it is to not slow down when you are sick. Slowing down gives those sucreations time to build and settle. (that's why you feel so gross in the morning) So I have been up on my feet trying to forget that I'm feeling so lousy.

Okay enough pitty, We got the bunk beds put together, and by we I mean my amazing husband who's left hand is raw, from all of the tightening of bolts and what not. THANK YOU ISAAC!!! We ended up hitting Ikea first and Morgan walked into the children's area and ran to a bed that was filled with hearts. She is such a girl...I LOVE it! So, we bought the heart Duvet cover and some other stuff. We were in and out of Ikea in 45 min. (this has never been done by us) WE then went to Ross found some Pink sheets, and made the room up. It looked so good with the green paint that I think we escaped having to repaint! Feww!

I am excited to start this new week. I am ready to start fresh!

Our Neck of the Woods

I have been non stop for over a week now. Finally it's Saturday, and Isaac and I are tackling as many projects that we can around the house. First, Morgan just got bunk beds!! well,they are not at ourhouse yet, my friend with a truck, will help me pick them up around 3. This is super exciting! Morgan had her last night of rest in her toddler bed, and is very excited about having a "big Morgan bed." Things we didn't think about...where oh where are we going to store the toddler bed? Oh and sheets...We do not have any twin sheets in the house. We have decided to take a few bucks and do a mini make over in her room. Right now the walls are a melon green color. So Morgan being Morgan has suggested we paint her room PINK and decorate it in PRINCESS!
Hmmm....I am a planner and I dont like to paint (Grrr, as I am typing I hear a sractching noise, I look under the table and J has drawn me a picture in purple on the wall...one more thing to add to my list) Anywho, I don't think PINK is the color, so I am going to take Mo to the store with me to find a more pleasent fresh color. Then it's off to Ikea for some inspiration on a budget. I am just not that into Disney so I will create a princess room with out any help from Ariel, Beauty, Bell, Snow White, or Cinderella.

Jonah has been doing well. Im holding my breath, as I hope his lungs stay..do I dare say it... good! He is loving the walking thing, and is slowly stopping the bum scootch, his former mode of transportation. His new PT does not want him using his walker, but indeed I jumped in and reminded her that Jonah does not have normal lung capacity, and his lungs are super floppy, which may sometimes mean that his lungs collapse. She backed off.

My super exciting news is that I am puting a team together to walk in the great strides walk 5k. A walk that brings in tons of money to help find a cure for Cystic Fibrosis. I am really enjoying finding companies who are willing to support Jonah's team: Jonah and the Whalers. So...If by chance you have a company or you work for one and feel comfprtable asking if they would like to be a sponser...OR if you would like to date as little as $1.00 to my team please by all means do so. Other then this we have been staying out of the hospital radar, and actually out of the doctors office too! I hope you all have a great Saturday, and please keep sending prayers to Jaxson, he is still in the PICU.