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!

Potty Talk

So I made the decision to use "regular" paper diapers for our trip to California. I was not sure how well the cloth would hold up while sitting in the same position for hours at a time. It might be kind of gross to be logging around dirty diapers for that fun 14 hour drive. I was also uncertain if it would bother Grammy or my mom & step dad to be washing poopy diapers in their washing machine so yes I broke down and bought a butt load (ha ha.. get it?) of paper diapers for the trip. My good friend Becky has recently converted to this amazing world of cloth diapering for her son, and said when she tried to use paper diapers for a medical reason he broke out in diaper rash. Guess what Jonah's hide is raw. While in California I was tempted to soak his rump in the ocean to see if it would dry it up, maybe I should have. The poor guy is now giving me pouty lips. He sure L-O-V-E-S his cloth diapers!...and baby powder.

A letter from the Doc

Jonah's pulmanary doctor gave me a copy of the letter she sent to our insurance company. It was perfect in explaining Jonah, and his diagnosis thus far. I know even I get confused when trying to explain it to friends and family, so I thought I would post it so you too can understand the big picture. It is testimony to me that miracles do happen, and Jonah is angel... So is his doctor for putting up with mama bear and carring for mr. complicated.
Warning...very long!

To whome it may concern,

Summary: Jonah is a 16mo infant born without complications. At 2 months of age he developed severe RSV bronchiolitis and pmeumonia.He also had Hemophilus influenza bactermia. He was intubated and ventilated, infact, requiring High Frequency Jet Ventilation. He was very close to being considered for cardiopulmonary bypass. At one point, there was discussions regarding withdrawing support, due to the degree of C02 retention.

He survived, and was discharged in early Feb of 2008, having been admitted on 1/14/08

He was subsequently readmitted on 3/26/08 with respiratory distress. He was hospitalized again in Aprilfor 2 weeks with Parainfluenza Bronchiolitis. He had human metapneumonvirus in June 2008. Despite, frequent ER visits and very close outpatient attention, he required a 4th admission in Sept of 2008 for respiratory distress. During that admission, he had a Nissen Fundoplication and G-tube placed for dysphagia and gastroesophageal reflux.

He has continued to require frequent ER and outpatient visits and constant telephone monitoring. He is on a significant amount of medication, yet is chronically in respiratory distress. He is now suffering the consequences of steroid dependence.

Hospitalizations: Between January 2008 and present, he has been hospitalized 4 times for a total of 105 days of hospitalization.

ER Visits: Between March to present, Jonah has had 14 ER visits

Diagnosis to date:
Chronic Airways disease
Chronic Lung Disease
Mild subglottic stenosis
GERD-s/p Nissenfundoplication and G-tube placement
Dysphagia
Sleep Dissordered Breathing
Steroid Related Obesity
Developmental Delay-related to chronic pulmonary disease
Recurrent C. Difficile positive diarrhea

Laboratory Tests & Procedures, To Date:
Extensive Immunologic Workup
Cystic Fibrosis Workup: Sweat Test & Mutation Analysis
Echocardiogram
"to many to count"CXR's
Polysomnogram
Numerous overnight oximetries
Flexible Fiberoptic Bronchoscopy & Bronchoalveolar Lavage
UGI
pH Probe
NG/NJ placement
Nissen & Gtube placement
Allergy Testing (RAST)
Swallow Studies-numerous

I have been caring for Jonah, as his pulmonologist since March 2008. In spite of appropriate care of his lungs and airways, as noted above, he continues in chronic respiratory distress. His base line is one of noteable increased work of breathing and audible wheezing. It is particularly concerning that he is now suffering from the side effects of steroids. Unfortunatley, neither myself or any of the physicians at PCMC have been able to adequately imporove his respiratory status, to the point that he can be weaned off of steroids. I am requesting a second opinion, with the objective documentation of Pulmonary Function via Infant Pulmonary Function Tests at National Jewish Center in Denver, Colorado.

There are no centers, no facilities in Utah, or anywhere in the west, closer then Denver, that perform Infant Pulmonary Function Tests. In addition, National Jewish Hospital/National Asthma Center is renowned for it's research in lungdiseases.

Jonah's health is static-clinically, his degree of pulmonary comprimise has not improved, despite attention to GERD and dysphagia, nutrition, airways infection and inflimation, yet the detrimental cosequences on his health of continued steroid use are mounting.

I desperately request authorization to allow Jonah to visit National Jewish Hospital and Asthma Center for consultation and testing.

I have more then 200 pages of hospital, ER, labs and outpatient visits for your evaluation, if so requested.

Thank you for your time and attention.

On behalf of Jonah,

Day Dreamer

We are looking forward to our much needed family vacation. I catch my self daydreaming about being on the beach with Isaac and the kids, showing them the Redwoods and such. Only five more days. It's fun to escape reality and recharge. I think everyone in this house just needs a break. We are really excited.
I have not heard a word from our insurance, when I call I am shuffled from person to person, computer animated "people" who are incapable of directing me to the pre authorizing office. So I have not made much progress. I am going to be more fierce.
Morgan's toe is semi healed without any anti biotic since she spit them out. I'm not sure if she should go back in to the doctor's again or if I should just wait and see if it completely heals. Jonah is still wheezing, I am in great hopes that being in the lower altitude he will breath with a little more ease.
Well, the kids are both up so it is time to put my mom hat back on. The quiet was nice while it lasted. We have a day full of appointments so we will be busy today. We also found a new park that is so much fun. Jonah doesn't care for the slides but he loves watching his big sis go up and down on them.