Meeting with the Surgeon, Car Shopping, and Joe's!

This morning we met with the surgeon who will be working with Dr. McOmber to place Bryce's G-tube. He explained everything to us and showed us what the tube looks and feels like. We now have to wait to get it approved by the insurance which could take 7-14 days. They will then schedule the surgery. He said that most kids are in the hospital 36 hours when getting this done, so that is something we will need to plan for. Bryce had lost another 2 ounces today. He is now at exactly 21 pounds. As sick (and sad, and mad, and scared, etc) as I am about all this, I hope we can get his surgery scheduled soon and start getting some nutrition into that boy! I hope his body tolerates it well. Since Bryce was borderline on the acid reflux, the surgeon suggested that we hold off on the fundoplacation and see how he does once he has the tube. We thought this was a good idea.

After going to the appointment today we stopped at Car Max to see what they had available. We are basically looking at 12 passenger vans and suburbans at this point. We're pretty sure we will be needing the extra cargo space in the near future. They didn't really have much to look at of either, but while we were there we had them appraise our current van. We thought we might just sell it to them. Well, it appraised at only $500! Pretty sad. Not totally surprising, but sad, especially considering that we put more than that into it just to get home from California. Oh well. Guess we won't be using that as a trade in! We also found out that the clunker program has now ended so we won't be going that route either. We are still very hopeful that we will find a good fit for our family. I'm keeping my fingers crossed that it will be soon!

Since John didn't get into work until after noon today he had to work late which made it hard to go out tonight. So he stopped by Joe's Real B-B-Q on the way home and picked us up some dinner. The two little ones were still awake when he got home, but they were quietly swinging and watching a movie (well, I guess Annalise wasn't really watching =), so John and I got to have a yummy, quiet dinner together. The two little ones have gone down to bed now and John has fallen off to sleep, so I guess I should join them! Pictures from the California trip are still coming I promise!

Two Months

Annalise is now 9 weeks old and went in on Tuesday for her 2 month check-up. She is now 10 lbs. 6 oz and 23 inches long. She got a clean bill of health and four shots. Ouch! She is already growing up so fast.

We have started giving her a bottle occasionally.
She took to it from the first moment and hasn't
had any trouble since. The boys love taking turns
feeding her!


Give me strength!
Actually Annalise loves sucking on her knuckles.
They are often raw because she sucks them so much.


Her brothers adore her!

She has started really smiling and the boys even

got a giggle out of her while we were on vacation.

It is so cute. These pictures don't really do her

beautiful smile justice, but it's all I have so far! I'm

sure there will be many more to come.

We sure love having Annalise in our family!

We're Home!

We made it home safely and all in one piece! Although real life has already begun to set in, it is good to be home. It's been great to see John again. Annalise has a Doctor's appointment this afternoon and then I hope to get some time to load some pictures and post about our trip.

Getting Home Today?!

We are still in California. The van has spent many days in the shop. First in Riverbank and now in Indio. It is suppose to be ready by 11:00 this morning and then we will continue our trip home, hopefully making it by early evening. Keep your fingers crossed! I'll post all about our trip once we make it home. I have lots of pictures to share! We're looking forward to getting home and seeing John again!

Hospital Stay

We are finally home from the hospital. We arrived there at 5:30AM yesterday and at 7:30, Bryce had the probe placed into his nose, down his throat and into his esophagus and then he was monitored for 24 hours as he ate normally. The only problem is that he does not eat/drink enough normally and we realized he was bordering on dehydration. So all through the day I was trying to get him to drink/ eat more. Unfortunately with a tube down his throat he ate even less than he normally does and it didn't work so well. So throughout the night he had to be force fed with a syringe. He hated it! It was terrible! It kept him from getting an IV though and he was just above the dehydration level this morning so he was able to leave today. It's a really good thing since he has an appointment to get his SWASH at 4 PM and then we will be on the road to California! Wow, what a crazy time of life!

Waiting in the waiting room...for two hours!


Annalise slept the whole time we were waiting.
She woke up to eat just as they took Bryce back
to put in the probe.





Poor little guy even looks miserable while he is
sleeping!

Bryce

I'm considering starting a separate blog just for updates on Bryce's condition, but have not yet decided for sure so, for today I will just add it all here. It's going to be a long one I'm sure. So much is going on right now, it's hard to decide where to start. Well, as you can see from the picture, Bryce has gotten his AFO's...Ankle, Foot Orthosis. So far he is doing pretty well with them. He has had a couple of times while sleeping with these on that his legs have cramped up pretty badly and so I have to ask about that when we go back. It appears to be very painful when it happens. We are still waiting on his SWASH. The company first ordered the wrong one, and then when the right one came in, a piece was missing, so we continue to wait. We are also still waiting on his HI/LOW chair that will help support him while eating, playing, etc. It's so hard to wait when your child is struggling so much! I've contacted the company many times and if for no other reason, you would think they would move things along just to get me off their backs. Oh well, tomorrow begins another week!

We have been accepted into CRS...Children's Rehabilitative Services at St. Joe's hospital in Phoenix. He now sees Dr. Aleck (Geneticist), Dr. Narayanan (neurologist), a pediatrician, and an orthopedic doctor there. I think that is all for now. He has also been referred to the Wheelchair clinic through CRS. We have our first appointment with them in Aug.

The end of June we had a good long visit with Dr. Aleck and Dr. Narayanan. We have seen Dr. Narayanan before, but this was our first visit with Dr. Aleck. Unfortunately the new team had nothing new to offer. Dr. Aleck confirmed that it is a form of leukodystrophy that he has. So I guess for now that is the diagnosis. It's a pretty broad diagnosis...kind of like saying he is a boy, more specific than just a person, but not by much. He has been tested for basically all of the known types of leukodystrophy, but we were told that 60% of children with leukodystophy go undiagnosed any further because there is just so little known about this disorder. Not a lot of research has been done. I guess for years these children have been misdiagnosed with things like Muscular dystrophy, Cerebral Palsy, etc. So I guess Bryce actually could have something that is not yet named...weird huh?! Also leukodystrophy is a genetic disorder so that is a little concerning with Annalise and all, however Dr. Aleck (the geneticist) said that considering we have 3 children without any symptoms of it at all and no past family history of anything like this, it is possible that John and I did not pass it on, but that it has begun spontaneously in Bryce. Again, weird huh?! =) So hopefully, we will not have other children with this condition, but who knows at this point. Sure makes me thankful that we have had at least 3 healthy children so far. Here is a link that explains a little more about leukodystrophy for anyone who is interested. http://en.wikipedia.org/wiki/Leukodystrophy

In June Bryce also had another MRI and EMG. The EMG was still completely normal and the report from PCH is that the MRI was stable, no new abnormalities, so that is good news.

Bryce also continues to lose weight. In June we met again with Dr. McOmber a Gastroenterologist. Bryce is going to have to get a feeding tube. =( We spent a month trying everything to help him gain weight...adding fats and calories to his current foods, night feedings, etc. and when we went in he had lost another 2 ounces. He is just 21 pounds now. It just makes me sick! However, we really feel that this is the best and actually only way to really make sure he is getting the nutrition that he needs, so we are doing it. This Tuesday he will be admitted to the hospital for a PH probe and 24 hrs of preliminary testing/ monitoring and then on Friday the 24th of July he will receive the G-tube.

Bryce's mind continues to appear mostly unaffected by his condition. Although unable to speak, he appears to understand what we are saying and he is very aware of what is going on around him. This is a huge blessing, but makes life very frustrating for Bryce. It's like he is a two and a half year old with all the wants and desires of a two year old, stuck in a three month old's body. He wants to run outside and wrestle with his brothers, he wants to feed himself, he wants to play, but his body just won't let him do that. He gets tired so easily. It has been one year ago this month since he began to regress. Just one year ago he was able to stand, crawl, talk, feed himself, and play on his own. We continue to hope and pray that he will one day be able to do these things again!

Fantastic Sunday

So far this has been a wonderful Sunday. I don't always feel that way about Sundays so I thought I better document it when it happens. :) Our meetings were very good today. I especially enjoyed being in Relief Society and talking with the ladies there and then in the hall with the babies. Nursery was great, and it's a calling that I truly loved, but it sure is nice to be able to attend Sunday School and Relief Society again. I sat next to a girl today that I have seen before but never met. She has a 6 month old little boy and they have been in the ward since January. She was very nice and I came home feeling like I had made a new friend. Isn't being a member of the church great?!

Then we came home, had lunch (omelets made almost completely by William!), put the little ones down for naps, and made peanut butter play dough for the older boys to play with/snack on. And now finally I've made it back to our blog. Here are a few random pictures and then I will update everything that is happening with Bryce.


Jacob and the Beanstalk! This is a bean plant that
Jacob is growing from a seed he planted at a Primary
activity. This picture was taken back in June. It
grew this tall within about a week. His plant is
currently growing in our garden.


Also taken in June, this is a picture
from our trip to Chick-fil-a. The boys
thought it was great that Annalise
would hold onto the balloon.


Annalise is just so cute that I had
to add this one too!

We've Made It!

Alea, our mother's helper, has been in Canada all week. When she first mentioned that she would be gone for a week I was a little nervous about handling everything here on my own for a week. Lately I have been looking more forward to having this time with just my kids and I here during the day. Well, I'm happy to report that we have survived...and quite well if I do say so myself! Granted, we only had one unexpected Dr. appt come up this week so that helped. And no, my kitchen hasn't stayed as clean as it does when she is here (I do miss having my floor swept daily), but there has just been a little bit more calm in our home this week and I have really enjoyed some fun times with the kids. She will be back on Monday which is a good thing since Bryce will be admitted to the hospital early Tuesday morning for a PH probe and will be there through Wed. We are then leaving for a trip to California on Thursday, so the extra help before we leave will be a great blessing I'm sure. I hope she is getting rested up this week!

Today we went to see the movie Kit Kittredge: An American Girl. It is a fantastic movie. I'm so glad we decided to go. I was debating on whether it would be something the kids would enjoy and if I could handle taking all of them on my own. Well, the 2 older boys and I loved it (Jacob and I both cried...yes it was that good), Spencer endured it, and Bryce and Annalise couldn't have cared less about it. Although Bryce really did like the monkey that was in it. There was one time that I had both little ones on my lap and one other time that I had to make a quick exit due to a crying baby, but overall, I think it went quite well. It may sound lame that I am so nervous about going somewhere with all 5 of them alone, but all I have to say is just come spend a day with us and you too will understand why it's a bit nerve racking! =) Luckily we all had fun and everyone, including Mom, came home in a good mood! I may just be willing to try it again sometime.

The Alliance

I just finished reading this book ( I love nursing because I can sit down and read without feeling guilty about it!) and it was great! It's written by Gerald N. Lund, the author of The Work and The Glory series. It's not a religious book, but it does involve some good vs. evil type of conflicts. It took a little bit to get into it, but then I was hooked and loved it until the end. The only problem is that it ended and that means I am now on the hunt for another good book!

Happy 4th of July

Today we celebrated the 4th with Jenn and Eric Crandall and their family. We always have such a great time when we get together with them. I only got a few pictures because my batteries died.

"The Star" in her first 4th of July
outfit that she got from Aunt Sheri.


Everyone who was brave enough to endure the
heat, enjoyed riding the horses. Mandy made it
the longest!



Spencer, Jacob, Anna, William, and Emma all ready
to eat.


Joseph and Annalise (in her second 4th of July
outfit!)


Jacob always loves the babies!

Jacob Crandall playing with the button on Annalise's

chair. He is the same age as Bryce and they both

seem to love that button!

John and Eric ended up spending most of their time working on our van...yes it is under repair again! Luckily my boys didn't catch anyone mentioning fireworks and so they didn't even care about going to bed and missing them. I saw one from out of the kitchen window and now I'm going to bed! Doesn't sound very patriotic I know, but I'm just so tired. It was a great day. Happy 4th!

Joseph and the Amazing Technicolor Dreamcoat

has ended! Once again the Queen Creek performing arts community theater puts on another amazing production. I watched a little bit of it with the boys on Wed. night before it officially began and then went to see the real thing on Monday night with Annalise. John did a great job and had a lot of fun. I must say though, I am really glad to have him home again in the evenings. It's just not the same without him. For the entire month of June, they practice every night from 5:30-8 pm, except for Fridays and Sundays.... So John would come home from work for a quick dinner and then be gone until after the boys were in bed. We missed him to say the least! It was fun to watch the play though and see many people from our ward. They all did a fantastic job!

Anyway if you would like to see some videos of them practicing you can see it on you tube. Just look up QC community theater and it should pull up some of the videos. Also here are a couple of pictures of John that someone else took. I never did get any pictures, so I'm glad someone else was thinking about that!

Practicing for Those Canaan Days

John and some of the other brothers practicing

for Those Canaan Days. This was a great part

of the play. John got to sing with a french accent

and sounded great!

John as Issachar

Spencer's 5th Birthday Party

Yesterday was Spencer's birthday so we had a little party for him. He invited 4 friends from church. Two showed up, so with them and his brothers, it was a nice number of kids. He chose to have a Scooby Doo party.

Here is a Scooby Doo toss game that I found on
clearance for $5. The boys all loved it!


We had a clown show up which was a lot of fun.



It's hard to see, but his cake has a Scooby Doo
candle on it.



Opening presents


Trying out one of the presents. It's a plane
that shoots into the air when you jump on the
base. It only ended up in the trees once during
the party!


The pinata. Spencer decided that he just wanted
to pull the strings on this one instead of hitting it.
I basically had to pull the little door open after the
kids pulled the strings off, but that worked just fine
for them and I still have a perfectly usable pinata
sitting in my storage closet just waiting for another
party!



Spencer getting his face painted by the clown.
She did a really good job! Alea, our mother's helper
was the clown. She didn't want the boys to know
it was her, so she didn't say a word throughout the
entire party. It worked out great and the boys
loved having a clown at the party!


Annalise was awake through most of the party
and just quietly sat in her chair happy as could
be. She is such a good baby!




I can't believe Spencer is 5 and will be starting kindergarten this year. Although he was born in Scottsdale, he was our first baby born while we were living here in Queen Creek. He came just 3 months after the move. He is such a wonderful little boy who continues to crack us up with his facial expressions and the quiet little funny things he says and does. We love you Spencer!

Happy Birthday Spencer!