My little old lady with oxygen and a walker

This is for the girls at work who love seeing Adi in her walker. She has been able to get around without help for a couple of months. Sorry it has taken me so long to put this on here. Just want you all to know that after Adi saw I put down the camera she started clapping. What a kid!

Can't get enough of it

We were in the hospital again. Adi's gagging was progressively getting worse, she was screaming in her sleep and then would be craby all morning. Poor kid was having a hard time. Then last Wednesday night she would only be able to sleep for 15 minutes at a time and then would scream until she'd pass out. She was tired and after a crying fit would close her eyes trying to go to sleep but would usually start crying again within a few minutes. We took Adi in first thing in the morning (Aug 20th)and were admitted to rehydrate her and give her some pain relief with some IV drugs. It seems it was a stomach virus which slowed down her intestines and was trapping air in her system. She had been trying to throw up but because of the nissen couldn't. We got home Friday night and everyday she has been getting better.

Meet Our Newest Addition

Ayzlyn Belle was born July 14th at 7:49am. Weighed in at 6 lbs 4 oz. and 18 inches long. She has been a perfect baby, sleeping most of the day and letting me continue to give Adi the care she needs. She has already gained a pound and 3 inches. She is a great eater and is such a great addition to the family. I am doing well and love being a mom.

Finally getting answers

Here is the family email we sent out. I will be adding more detail in the next post.

First of all we apologize for the delay in getting this update out to you all. Our latest adventures with Adi have finally brought some answers. We were admitted to Primary Children’s on Thursday the 11th of June, because Adi was progressively eating less, having restless sleep, grunting and screaming out in pain especially after she ate. Her love of food kept her eating but she started drinking less and struggled a little more each time she swallowed. She was just not acting like herself. She just wanted to be held all the time and had little to no energy.

To not make this email too long I have decided to summarize the findings. One of the reasons we were admitted to the hospital was because Adi couldn’t maintain her oxygen saturation in the 90s. An abdominal x-ray was taken to check if she had a bowel obstruction. There wasn’t an obstruction but they did find she was backed up so they gave her an enema (she ended up getting several in the next couple of days). Once they found out she was completely cleaned out and still not holding her oxygen saturation at an appropriate level, a pulmonologist was asked to review Adi’s x-rays. Dr. Uchida told us he was amazed she’d ever been on room air after her 2nd surgery. Her diaphragm is abnormally shaped with the right side being higher than it should be and the heart looked enlarged. He ordered an EKG, echocardiogram, and a test that shows the function of the diaphragm under fluoroscopy. The EKG showed possible enlargement of the right side of the heart and possible pulmonary hypertension. The echocardiogram findings disproved the possible problems shown in the EKG and that everything is ok with her heart so we are very grateful for that. The diaphragm study showed the right side is basically paralyzed and is blocking the lung from fully expanding. So far we’ve been told that the only thing we can do for that is surgery. They also did a stomach emptying study to make sure the contents of the stomach empty in a timely manner which is the case with Adi’s stomach.

We were released from the hospital on Friday the 19th. Adi has a feeding tube and is on oxygen 24 hours a day. Her continuous feeds are giving her about double the calories as normal children her size. The GI specialist and surgeon agreed she is malnourished and wanted to give her additional nutrition through her veins. They tried to place a PICC line but failed 6 times in each arm, so for right now we will see if the tube feedings are sufficient. We will continue to give her the thyroid medicine and growth hormone in hope to get her growing and healthy enough for surgery.

This little kid is a fighter. It was hard to watch her go through so much pain to get these answers but we are finally feeling like we have a better understanding of what needs to be done in order to get this kid healthy. We are grateful for her strength and ability to overcome all these trials that have come to her at such a young age. We continue to appreciate your prayers in her behalf. We love you all and can’t wait to see you at the summer festivities.

Love,

The Whitakers



Feeling a little better and ready to start making a mess.

Latest on Adi

This month has been filled with appointments. After meeting with the surgeon in April, we have been meeting with everyone to see if we can find out any additional information before making the big decision to operate. On the 19th we met with Dr. Stotts at Shriner’s to discuss the next step to helping her walk and deal with her contractures. He believes with continual stretching and standing she will be able to work through her contractures just as she did with her hands. On the 20th we met with the perinatologist to make sure everything was looking good with this next baby. Everything looks great!!!
The 22nd we met with Dr. Donaldson, an endocrinologist, to see if he could shed any light on why Adi isn’t growing. He ordered some tests to check her hormone/ insulin levels and thyroid. Tuesday, the 26th, we met with Dr. Bleyl, her geneticist, who told us her chromosome test came back normal and if she continues to not grow we would continue to do a few other tests to check her ability to store fat and a study to check her bone age which is a way of describing the degree of maturation of a child's bones. We will follow up with him in 6 months.
Today, the 28th, we met with her GI doc, Dr. O’Gorman and Sharleen, a dietician, to discuss what they think. We found out from the endocrinologist office Adi has a thyroid issue and will need to start on 25 mg of levoxyl. The other test isn’t back yet so we will have to wait for those results. They suggested we place Adi back on a NG tube to supplement her calorie intake. Scott and I don’t feel that’s the answer—she is eating well and knowing the NG didn’t help her gain weight the last time we are not quick to return to torturing Adi that way. After voicing my opinion and feeling a little outnumbered things quickly changed. As a family we have praying the specialist working with us will have answers to help us come to the best decision for the next step we should take. I know Adi needs to have better nutrition and have been thinking about how to help her like drinking anything but water. I have been wracking my brain and looking for anything that would be a good substitution for milk (which she needs for calcium and calories) and have just not found anything. When I was talking to Sharleen about her needs without remembering those concerns, she brought up several suggestions. During the trip home, a feeling came over me- I was not alone in this process. I was tired and couldn’t remember as much as I normally could but Heavenly Father knew what I needed and he inspired Sharleen to answer my questions without me asking. How grateful I am to know when we ask for help and invite Him to help us He will not leave us alone.

Memorial Day Weekend…family bonding

Scott got awesome prices on a hotel room in Vegas. We went down and had a blast. We got talked into going to a time share presentation where they give you free tickets to shows, credit to eat at some great restaurants, etc just for attending. When we got to the presentation we were told they had overbooked so they gave us the free stuff without having to sit through the presentation. Score!!! Entertainment was taken care of for free.
Adi has always loved her dad but this weekend she reached a higher level of love… anytime he left her sight she would cry out. She can make quite the scene when she wants to.



It took being on Temple grounds for Adi to like grass

May 1st Graduation

In Mom's words: Well, it is official. Scott Udell Whitaker graduated today from Utah Valley University with a bachelor's of science degree in Aviation Administration. This was the first commencement held since the school gained university status. Pres. Monson was the commencement speaker and he and Sis. Monson received honorary doctorate degrees. It was a very nice meeting. Scott and Anna have worked very hard to achieve this and we are so proud of them.






After graduation we went up to Dick's cabin with "the gang" to shoot clay pigeons, relax, and as always eat a lot of good food. Adi wanted to be cool like her dad so she let us put ear plugs in her ears. She loved being out watching us all shoot.