Monday, August 24, 2009

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.











Thursday, June 25, 2009

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.

Friday, May 29, 2009

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





Monday, May 4, 2009

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.



Mikelle and Scott's b-day celebration

Scott and I decided we wanted to have a little birthday party for him and Mikelle. We just don't know what the future has in store for us and where we will be next year. Kaelin and Halle helped with the cute decorations-- they did a wonderful job!




Latest on Adi's health

March 18th- Adi started with a fever of 101 about 3pm. About 7:30pm I called the after hours nurse and was told it was probably just a stomach flu. I tried everything I could think of to brake the fever, cold wet cloths, motrin/ Tylenol rotation every four hours, bath, and just not having clothes on her. Her fever got to 103 at about 1 am and didn’t brake until 4am. What had been more concerning is that she had stopped wanting to eat or drink. Now you maybe thinking that is normal when you don’t feel well—but in Adi’s case we just can’t afford her not drinking or eating because she loses weight so quickly.

March 19th- Called her pediatrician to see what she thought I should do. We went in to have some tests ran on her. I have learned Adi’s not the normal child and appreciate talking to doctors who know her personally. Dr. Kendall knew there was an infection we needed to find- Adi was cathed for a urine sample, poked for blood test, and then sent for a chest x-ray. Heavenly Father takes care of us and shows it in so many ways— As I was walking down to the lab I ran into Karen Spear – she is a nurse for the agency I work for and Andrew’s mom (one of Scott’s friends). Karen was on her way to drop off some labs and asked if I’d like for her to stay with us. What she didn’t know is that inside I was freaking out, tired and so sad I wasn’t going to be able to be by Adi when they took the x-ray because I am pregnant. Timp hospital has this little cage contraption they place her in which scares her so it was nice that someone was going to be near her she knew and trusted. After experiences where she is taken by a nurse or just anyone with scrubs for tests, without someone she knows, she tends to have night tares and restless sleep for the next couple of days.
As I was leaving the hospital I got a call from Dr. Kendall telling me Adi had pneumonia and her urine sample showed she was dehydrated. I returned to the office and Adi was given a shot of rocephin and then was to start azithromycin for four days.

March 21- Saturday, the antibiotic had caused Adi major diarrhea. I had called the after hours line to ask if there was anything I could do. I was told it was normal, to hold out for two more days, and follow the brat diet.

March 23- Grandpa’s funeral was a wonderful experience. Grandpa led a wonderful life and he has left a legacy of great faith and love. I don’t know how people deal with death outside the church. Gospel principles bring peace and happiness. I know Grandpa was more than excited to be reunited with Grandma and be free from the limitations of the human body. I wish I could have seen just a moment of that reunion.
Since Friday night Adi had been lethargic and would not hold her head up for more than a minute. I was relieved Laurel was in town so she could give me her opinion on what to do. Here is the email Mel sent out to the family about what happened next:
Sent Tuesday March 24th
After the funeral luncheon, and an inspection from Laurel,
Scott and Anna took Adi to the hospital. They gave her an
I.V. of fluids and with the hydration she immediately perked
up a little bit. They tested her blood and found her white
and red blood counts very low. They said the blood test
could possibly have been too diluted (their mistake) so they
would try again the following morning. They were also
considering that she had never had pneumonia. This morning
they took another blood test and the counts are all still
low. They now do believe she has had (and still has)
pneumonia, and are now looking to see if she has a virus
that is suppressing her bone marrow and causing the low
blood counts. She will be in the hospital for 2 to 3 days.
Adi will most likely have more blood work done before she
leaves and if there is still not a definite cause for the
low counts found, they will do blood work once a week. I am
a little hazy on those last details. I will send this out and anyone
with any corrections or extra details can feel free to share.

It was great to see so many of you yesterday!

love to all,
Melanie

Dr. Kendal came in and told me there was no way the blood test numbers had been wrong. Another blood draw that morning confirmed the results of the previous day. The admitting doctor the night before had told us the only way her counts were as low as they were was a virus was suppressing the bone morrow from producing or she had leukemia. Dr. Kendal confirmed his statement and told us we just needed to wait to see what the snot test results were, which tested for a varity of different viruses. At this point we just don't freak out when they give us such "worse possible scenarios" diagnoses.

March 25-
The snot test came back and it showed it was RSV. After having sent the x-rays to Primary Children’s, a radiologist compared other x-rays to the one taken at Timp and concluded the haziness they found on the Timp x-ray was consistent with other x-rays previously taken. It seems that what they called pneumonia was probably just scare tissue from her surgeries.
Blood results from the day showed her blood counts were going up but still low. The bone marrow was making infected cells so – not going home for about two more days.

March 27-
Here is another email from Mel to the family:
Adi came home from the hospital this morning. Her blood counts are up--HURRAY! She seems to be in the last stages of this virus. A few days ago they decided it was not pneumonia at all but RSV. Scott and Anna have a blow by oxygen machine for this evening if Adi's oxygen levels drop low in her sleep, but other then that she seems to be doing well.

Mel

We had an appointment to meet with Dr. Rollins, the surgeon, next Friday the 3rd and have an esophagram study done to see what progress her esophagus has made. I called and told them what had been going on with her health and rescheduled for the 17th.

April 17th - Man, I love Scott!!!! He decided he needed to come up with us. The esophagram was scheduled for 8:30am and then we were to meet with Dr. Rollin’s after the radiologist’s finished his report. The esophagram went smoothly. Adi had to drink about two ounces of barium and as many of you know this little girl doesn’t like eating/drinking without seeing someone else doing it with her. Scott being the amazing father he is took several sips in order to help Adi drink enough.
Our hope was that her esophagus with all the eating she’d been doing, had corrected itself- the motility and shape had become normal.
The results of the study came back showing the motility and shape had both worsen. According to the surgeon we have two options:
1) To not do anything-- her esophagus will eventually stop working and she will be on a permanent g-tube, or
2) We have one more chance with surgery where a g-tube would be placed to supplement feedings until she hopefully can start gaining weight and the esophagus starts working correctly.
Scott and I asked all the questions we could think of. One of which was what he thought was causing the problem. He thinks but can’t know for sure, that her stomach has re-herniated. Scott asked if it could have been caused by her esophagus being too short. He said he would consult with his colleagues to see what they thought. If the esophagus is too short there is a procedure they can do to lengthen it. He would want her to be a little older before he did it.

I have to admit after talking to the doctor I felt discouraged. I just want the best for my little girl. Two nights after meeting with the doctor, Adi woke up screaming and squirmy. I took her out of the room so that Scott could continue sleeping, placed her on the floor to change her diaper, and she just zonked out. I changed her diaper, made sure she was breathing and went to the back room to cry. I hit my knees in prayer just asking for help to know what to do for this little girl. It is hard watching her in pain and not really knowing why.

Hope- To make a long story short these last three months have brought a lot of hope. Merlin has been great to have us work with Jim. Out of everything we have tried Jim has produced the best results. Adi started sleeping through the night (as long as she is feeling well). She is standing for about 2 minutes and just looking happier and healthier than ever. Doctors and specialists who have been working with her for most her life have commented she is looking the best they have ever seen her.
Adi has learned the hand movements to popcorn popping, patty cake, the itsy bitsy spider, and two little Spanish songs. She has learned many signs in sign language and will remind us to pray before we eat.
We have come to the conclusion that sometimes doctors give you the worse possible scenarios before they really know what’s going on. We have decided to take what they say into consideration and put our trust in the Lord to make the best decisions as a family about what we will do about Adi’s esophagus and growth issues. We will be meeting with an endocrinologist who comes highly recommended by some friends and will meet with the surgeon a couple of months after to discuss what we have both found out and have more of a definite plan about what we are going to do. We thank you all for your prayers in our behalf. We have seen the hand of the Lord in this process and know we have received the strength to continue in this long journey as a direct result of it.