Answer me this...

This week is passing by me to fast! I have so much to do before the big trip, and I stare at my check list and have only accomplished 2 things... the slacker in me always starts up when I feel the stress. Yesterday I ran around the salt lake vally picking up any extra medical records that will be needed- side note... we live in a day where everyone has a computer...even my 82 year old GMA, so why can't the hospitals just email medical records? I feel like I could put a book together with all of the HIPA crap I have signed! Anyways, I have now collected all of the extra records that may or may not be needed.
While at the store on Tuesday I get a phone call from the Pulmonary specialist asking me to collect these extra few things and she had also asked if I had any questions...I always have questions! So wait back up.... she sent me a form explaining the IPFT (infant pulmonary function test) 3 days ago. It talked about the vest that would push air in and a box he would be lying in... all that stuff I had posted before, but wait it also read that they would need to place a top on the box...this is really freaking me out. So when I asked her about the top on the box she kind of laughed and said "most parents are more concerned about the vest that will be placed, not the acrylic top to the box." Ahhh, I feel like I am co-staring in an episode of the Twilight Zone. I was then invited to stay in the room while the testing is taking place... I feel so torn, I want to be there for Jonah, but the top on the box is really bothering me. It is causing more anxiety and more reason for me to not want to do this anymore.
I know what your thinking... grow up already, but I really do have fears with stuff like this. Remember he will have a mask on plus his oxygen. It seems so claustrophobic! So just a question I'm throwing out ... What would YOU do? Stay with your child like a decent parent or sit out side the door wondering whats going on?

My Friend Diana

Today the world morns, as it has lost a daughter, mother, sister and unbelievable friend. In return heaven has welcomed a valiant spirit back home. My beautiful friend Diana Good Smith has passed away. I am so sad. I have seen this remarkable woman go through so much. It was very hard at times just to sit on the sidelines and watch her battle her fight with MD. So many times I had prayed that she would just be taken, that she could just be at peace. But in the end I still wanted her here. I wanted her to be better for her two amazing children and supportive husband. I wanted her to stay here and to continue to educate those around her about special needs and resources available. I just wanted her to stay, and be healthy.
I had last visited with Diana on Friday morning. I knew then that it wouldn't be much longer, but I still had hopes. When I went in her room for a visit her mom was there sitting there bed side and she had mentioned to me that Diana always wondered why she was never given a middle name, her mother told me that she has now given Diana a middle name; Diana Charity Good Smith. A very fitting name!
It is so hard to loose people that we care about. I know that I at least have the comfort of knowing that we will see each other again, until that time comes she will always be in my heart.

Lucky # 7

This morning I won tickets to go see Joel McHale! I am so excited. I love this guy! I can't wait...but I will have too, he will not be in Utah until June. Thank you Z Morning Zoo! (97.1 zht)

Morgan Andrews Silly!

Morgan can make me laugh so hard some times. It's just her innocence that makes everything so funny! I am trying to type this and she is asking me to smell her feet because they"smell horid"(her words) Infact her words are what make me laugh. Her new joke, that by the way shemade up all on her own is this:

Knock Knock

Who's there?

Morgan

Morgan who?

Morgan Andrews silly!

Then tonight I took her with me to Sam's Club and she saw a five layer dip she looked at me and pointed to the dip asking "what kind of cake is that?"
Earlier today she had misplaced her shoes and I am running around the house in search for them because if we don't leave right now we are going to be late to her dentist appointment. I asked her to start looking for them. I was in Jonahs room looking so she followed me in and...I'm not sure if this was a blond moment or not...let's just say it was. She picks up one corner of the car floor rug and says "nope, not here" then walks to the other side and lifts it up "no not here" I was so frantic I just wanted to screem the mat is flat!
This girl is just too funny. I love how much personality is in this little person. She is really a special little girl.

Take It or Leave It...Ill take it!

Today is apponitment day! Our family expieriences one of these crazy days once a month at least. Among the appointments today was another trip to the not so fun, fun Clinic. We were in the waiting room forever! The MA came out and brought us back to our closet...I mean room. She had me undress Jonah and follow her down the hall for the big weigh in. DUN DUN DUNNNN. He weighed in at 21lbs 12 oz...not good. (just a side note; most children who go to the FUN clinic are underweight, really underweight! Jonah looks like a beast compared to the other children there.) The MA also had measured Jonah. He grew! Yep, he grew .1 of an inch! He is now 26in. I'll take that! We went back to our room and waited for the nutrisionist and doctor to come in. I was looking at jonahs cute little body. It's sad that this little boy has so many scars. I usually don't see them because I am in a rush to put a onsie over his feeding tube, so he won't pull on it. But looking at all these scars I started a sick game (see what happens when they leave you waiting) The game was: Could I name where each scar came from. The ones on his inner thigh- shots, the 4 on his belly-nissen surgery, the two on his left foot- a procedure gone bad, the few on his hands- IVs, the one on his upper arm- Picc Line. There were 2 that I just could not figure out. Manic.. just a little. Any ways the doctor came in and answered a bizillion of my questions and let me know that they wiil need to decrease Jonah's calories a little more. It seems that all of the doctors/therapists all want to see Jonah off of the steroids. Then perhaps life will be easier for this kid. Hopefully with the help of Denver children's that goal will be accomplished. Well now I am off to have his hearing checked. Wish him luck!

Happy Easter

Cross your Fingers!

I am happy to report that in the past week nothing new has hit us. Can you believe this? Niether can I. So because of this lack of current events I don't have much to write about.

I have not been to the gym since the end of January. Last night I maned up and went. I don't mean to sound gross but I love the way the gym smells! (it doesn't smell like sweat...I promise) So I went in with a goal to burn at least 300 calories and then I could go home. By the time I hit 70 calories I was ready to crawl home...Pathetic, I know. I stuck with it and ended up burning 450 calories. I was a hot mess when I got off the treadmill, I couldn't even stay to stretch. As soon as I walked in the door to our house, I fell on the ground and did my stretches. I am so greatful that I have no pain today! Tonight I will set my goal for 450 calories and hopefully be able to build up some resistance. On Monday I am hoping that I can switch my gym time to the early am hours (while everyone is still in bed) Because I have such a hard time falling asleep after working out in the evening.

On Tuesday Isaac and I took the kids up to Ogden. We went to visit the aerospace museum. It was a lot of fun and the best part was it's free! Morgan was so funny. After looking at all the planes outside we went inside the museum to read more history and to see the exibits. One of the exibits was of former U.S. Airforce uniforms. There were manicans modleing them and because the museum was trying to conserve energy the lights were dimmed. Morgan was freaking out. At one point she turns to me and says "It's to scary, make them hide!"

So that's about it. I will keep you posted on Denver. Thank you for reading my blog!

Denver's Calling

Morgan's dance teacher was so impressed with how well she did at yesterday's dance class. Practice pays off! Her dance recital will be in May. I had the chance to peek at her costumes and they are so cute! I will be sure to post pictures when that time comes.

I finally got the call we have been waiting for...Jonah will be going to Denver May 4Th. I am so happy to be seeing all of this moving forward. My mom will be flying out here to help with Morgan while Isaac is working. I also spoke a lot with his Pulmonary Doctor today. She has put more and more thought into what she thinks is going on with Jonah. Hopefully these tests will prove it and we can start with a different method of treatment. There are still a few items I need to collect from PCMC to send out to Denver, then we just need to count down the days.

Very Lucky Mom

I have had such a quiet day. It's unusual in this house. This morning a friend invited Morgan to a church activity, so it was just Jonah and I since Isaac was at work. We had wonderful bonding time. As Jonah is now "crawling" I have to constantly move his legs into the right "start" position. He tends to go through his legs like as in doing the splits. The Physical therapist has told me over & over that if he keeps doing this he will need a hip replacement (I'm not sure if she is teasing) When he does this his hip bone is rubbing into his hip socket. Anyways, I was working with him & I could see he was tired so I just held him and started rocking him back and forth for some extra stimulation. I have never heard this boy laugh so hard. It was a full on belly laugh! Laughing is contagious and warms the soul.

Morgans dance recital is approaching fast. The dance teacher sent home a copy of the dance music with her voice on it walking the children through the steps. Morgan has to practice at least 15 minutes a day. My little dancer is wanting to practicing for 30-40 minutes a day. She just loves it. I am so proud of her! She has found something she really likes to do. Morgan has also found a new obsession... balloons. Every store we go to she wants a balloon. Any house we go to that there is a balloon, she thinks it's her balloon. Even driving down State street and seeing the balloons at the car lots, she demands that I pull over to get her a balloon. Are you kidding me? Thank goodness for the dollar store!

So Morgan went in for her three year old check up and I heard words that I have not heard in forever, if ever...YOUR CHILD IS HEALTHY, AND LOOKS GREAT! well at least one kidlit is doing good, right?

Jonah's doctor called me Tuesday. He will not be going to NJ. Instead she is sending him to Denver Children's Hospital. I'm kind of bummed but I understand. She needs Jonah to take a specific test that they no longer preform at National Jewish. It is called the Infant pulmonary function test. It is a test that will require Jonah to be mildly sedated. They will then inflate a vest that will apply pressure on his lungs and then the mask that he will be wearing will measure his lung function. It sounds interesting. I have read a little about it online and learned that it will be about 2 hours long. I am sure other tests will be done as well, since he will be there for a bit. The doctor also let me know that he will need to get a CAT scan, and possibly have a lung biopsy. Both of these things will be done here at Primary Children's. I am not sure when, I will keep you posted.

I wanted to thank those of you who are praying for my family. Everyday I see new blessings. How lucky am I to have these two specia littlel spirits know me as their mom? Very Very Very Lucky!

California

We had such a great trip to California! We even ended up staying a day longer then planed. We left early (5 am) on the 9th, and after much feeding tube chaos and Teletubby hell we arrived in Sacramento at 5:oo pm. We were all ready to be out of the car! We had a great visit with Isaac's Grammy, his mom and his sisters family. We then travled a short distence to Manteca to visit with my aunt. It was time to load up and take our travles to the bay area. We first stopped in Santa Cruz to take a coastal drive. It is a drive that I have enjoyed since I got my license... okay since I got a car. We then located my mom who was still working and decided to follow her home, since we had never been to their new place. We had so much fun! The next day I was able to drive to San Jose with my Mom and the kids to see Gramma & Gampa Miller. It was ssuch a nice visit. The kids and I went to the beach, the Monterey Bay aquarium, and to the " Big Ball Park." We had a nice visit with Grandpa Doug and aunty Ashly. They took Morgan birthday shopping at Toys-R-Us. Then we met up with Isaac's aunt Kathy Jo and family at my mom's house. Kathy jo brought cup cakes and we sang happy birthday and celebrated Morgan and cousin Robin's birthdays. Then we went to the beach again to let the kids run around. Jonah hung out with me and ate sand...he did. I didn't. my mom had cooked a wonderful dinner and I had invited two of my best childhood friends and their families over. This was the highlight of my vacation. My sisters were there, my aunt Lisa my mom and step dad my friends, and my beautiful family. It is at these moments in my life that I am thankful for all of the blessings given to me. The blessings will always out weigh the grief! This is what I needed to be reminded of. It was the reason why I needed to go "home." Now that I am back in my real home I am ready... So bring on the rain!