Visit to Idaho!

We spent this past weekend in Idaho. We had a blast! It was a MUCH needed break!!



Us hanging out with grandma & grandpa Summers.





With aunt Kristin. (Corey, the favorite aunt competition is getting fierce!! You better come back ready to battle!!)



Rocking out with grandpa Dalton.



Jaidin hanging out with cousin Taylor.

Doctors & Birthdays

Playing with dad in the waiting room at Primary Childrens.



4 months old here!!


It's been a busy week!! Jason turned 29!! I turned 27!!! And Jaidin celebrated her 4 month mark!! We are all sooo old!

Yesterday was eye procedure #7 for Jaiders. Unfortunately, the pressure in her left eye has gone back up. : (
I believe it's at a 22 (normal is 10). It looks like we are going to have to put a larger valve in. Her eye is still healing from her previous procedures, so we will use pressure reducing eye drops until then. We'll probably switch out the valves in about a month or so.

Other than that, Jaiders is doing great! We went to the pediatrician for her 4 month check up and she is meeting and exceeding all of her 4 month milestones!!!!!! It may sound stupid for me to be so excited for that, but when you don't know if your baby has any mental abnormalities or not, little accomplishments like that mean the world!! (We don't think she has any mental problems, but we don't know for sure. So any normal checkups are always a sigh of relief). We love our little one to death! Especially all of her little noises and her new-found interest in the world around her!

Jaidin's first words

Woe is the Sun

I thought I found a solution to our little sun problem. If you don't know, Jaidin HATES the sun. It's too bright for her and her poor little eyes just flow with tears the second the sun hits her. She will burrow her head into my shoulder and squeeze her eyes shut as tight as she can whenever we go outside. We think the sun actually hurts her eyes because (sometimes) after a few seconds of exposure, she will start screaming uncontrollably and squirming all over the place. There have even been a few occasions where it has taken over an hour just to calm her down after a dip in the sun. So, needless to say, Jaiders and I spend our days safely away from the sun (indoors). I also think this is part of the reason Jaidin screams so hard whenever we go anywhere in the car. Not because of the sun, but because of the fact that we have to completely cover her up while she's in her car seat to protect her from the sun. (so yeah, I guess it is b/c of the sun). Anyhoo, I think it scares her and bothers her to be sitting all alone in her little, enclosed, dark cocoon.

Well.... after much research, I thought I found the perfect solution. Baby sunglasses! (the research was mostly in finding exactly the right kind). I knew it was a risky move, but I was desperate. We get really cooped up being inside ALL day, EVERY day. And waiting until 8:30 pm just to go outside is getting old.... Especially since it's dark come 9 pm!! So.... I invested in a pair of these baby sunglasses. Well, as I am sure most of you have guessed, little Jaider-bug does NOT like them at all! I think you'll see me making snow angels in a bikini (make that Jason!!) before you see Jaiders sportin' her new shades!! But I'm not giving up! I will make daily attempts to get these glasses on her face (and have her loving them too)!!

HAPPY BIRTHDAY DADDY!!

This tops marilyn monroe's famous happy birthday mr. president song....



Since Jason is in D.C. for the week, we made him a little e-card/pic for his birthday.

HAPPY BIRTHDAY HUN! We love you!! Even though you've only been gone 1 day, we miss you already!!

A Visit with our Geneticist

Thanks to my mom for this life saving device! Jaiders (who doesn't like anything but being held) loves this bouncy seat! Finally, some relief in my day! The first time I put her in it, she couldn't stop laughing!



Jaiders really looks like me when I was a baby in this bottom pic. I'll have to post a side x side comparison (eventually).



The pics don't really have anything to do with this post other than the fact that they were taken on the same day as her appointment.

Yesterday we had another visit with our geneticist. We believe that Jaidin has a particular syndrome, but until officially confirmed, I am not going to "start any fires" by going into it. We are somewhat confident however, that she has this certain syndrome. All of the pieces and all of her symptoms seem to keep pointing to it.

Anyhoo, we had a Genomic Microarray U-array Chip test performed on Jaidin a little while ago. This test identifies DNA copy number gains and losses associated with chromosomal imbalances. (It basically looked over her DNA & chromosomes to see if there were any missing or duplicated chromosomes in her DNA).

We are happy to report that her test came back normal!! Yay! BUT- this test only looks for duplicates or deletions; it does not detect changes in the DNA strand. Basically- if you have a sentence, this test will detect if there are any missing or duplicated words; but, it cannot tell if the words are mixed up or written in the wrong order. So, we are now going to get the test that will detect any dna mix-ups. We are also going to do some specific chromosome testing, as we think we know what syndrome we are dealing with.

We need to get some of these tests pre-approved by our insurance before they are performed, but as always, updates will follow.....

FREAK!!

Everything was all fun and games............ (isn't she ADORABLE in these pics)!!!



and then......





Talk about freaking me out! This girl is going to turn me gray before I am 30!!! And of course I was home alone when this happened! I am ALWAYS home alone when anything scary with Jaidin happens. I had to document it because everyone always asks me a million questions about what went wrong & what I saw and I am always too flustered to remember details!

BTW......

.....Jason wrote that last post. (just so no one thinks I'm a crazy who refers to myself in 3rd person). Like that Jimmy (i think that's his name) from Seinfeld!

Yesterday marked 6 weeks in a row under the knife for our tough little Jaidin

RIGHT BEFORE WE LEFT FOR THE HOSPITAL......... If you click on the 1st pic, you should be able to see the pericardium (donor heart tissue) that is in Jaidin's right eye (used to cover up the drainage valve in the white part of her eye). Her left eye is still too swollen & red to see the pericardium.



AFTER SURGERY IN PACU..........


Hoooraaay! Jaidin's right eye is at 7 bars o' mercury and her right eye is at 11 bars. (down from 30 & 35) (normal is 10) Now if we can just get the pot o' gold at the end of the rainbow we'll be set.

No surgery until two weeks from today. Jaidin sure needs a break. Hopefully she'll perk up. She's down to 4 drops in each eye per day. Hopefully we'll only have one more time under anesthesia for her eyes. (yeah right)

Jaidin loves her momma. She's on the tit all day.

Heidi is a trooper. Jaidin has her wrapped around her little fused fingers.