I disabled comments....

Who knows, I might enable them again..... But for now, I am turning them off.

Turkey & Blessings......

I wrote this post a few weeks ago and I just barely got around to adding the pics, so it's a little old!





We spent turkey day in I.F. & Rexburg. Part of the time we were with my family at Josh and Kristin's house, and part of the time we were with Jason's family at his parent's house. It was a BLAST seeing everyone! I LOVE family time!!

Also, little Jaider's got blessed! She looked so precious on her special day! She was such a good girl during the whole event! It was so great having so many family members with us to share that wonderful moment in time! (I KNOW- totally cheesy sounding)!!

We are also pleased to announce that little Jaider's has movement and usage of BOTH of her pinkys!!! This was something we were very worried about and she is doing great! Her pinkys are quite stiff, but we are working them out and exercising them as much as we can. She is doing GREAT!!!!!!!!!!!! oh yeah, except..... she is sick with her first fever/cold. My mom always said there is nothing worse than a sick baby and guess what?? She is right. These last 2 nights and days have been hell! I feel like a zombie. Last night was spent at a 90` angle in a rocking chair b/c that is the only way my little baby could breathe. Poor thing. Good thing babies are sooo freaking adorable because they get away with murder! It might be because my baby has her mommy wrapped around her little finger too!

sniff sniff..... what's that smell? (heather, that title is for you)

Here is a little Jaiderbug update:

On Tuesday or Wednesday of last week, I started to notice that the cast on Jaidin's left arm was smelling funky. I had just changed the dressing on it, so I assumed some boob-juice must have dripped on it and went sour. So, I changed it again. But, the smell returned. More sour milk I thought. So I changed it again. The smell instantly returned. Hmmmmm..... Then Jason came home from work and told me I needed to change Jaidin's outer cast because it stunk! What?! I'd changed it 3 times that week already! So then I start thinking that maybe it's not sour boob juice. Maybe the smell is coming from underneath the cast. So I begin my google search into smelly casts. Results = infection! I get nervous....

First thing the next morning I call Jaidin's hand surgeon to inform him of the smell. He's not in the office, but his nurse tells me that casts often get smelly and that I shouldn't worry. She said that infections come within days of surgery, not 5 weeks after. I didn't feel good about it. Her right arm wasn't smelly and she had been fussier than usual. So I politely tell the nurse that if we wait to take Jaidin's cast off and her fingers are so infected that she has to get them amputated, that I am holding her responsible. Then I ask for her name. She pauses, then puts me on hold to run our situation by another surgeon. They decide that it's better to be safe than sorry and they want us to come in to have Jaidin's casts removed. (I have to admit, although I was nervous about the possibility of infection, I was soooooooo excited for my baby to finally get her fingers back AND to see how her fingers looked! I had been counting down the days for this moment for awhile!!)

After soaking her casts in the tub to loosen them up, we were off to Primarys. NOTHING could have prepared me for what I was about to see. When they took the cast off of Jaidin's left arm (the smelly one) I about had a heart attack! It WAS infected! Puss, black, red, waxy.... I cannot even put into words how gruesome the sight was. Luckily, stuff like that does not gross me out at all. Jason said he literally almost passed out. It was bad. Jaidin's other hand looked pretty bad too. It wasn't infected, but it definitely was not healed. I had no idea how scary her fingers would look. I just thought they would be healed and as good as new! NOT SO. We did some tests & blood work to make sure the infection had not spread into Jaidin's bones. Hearing that infections in bones lead to amputations was very unsettling. Luckily, we caught hers soon enough. Had we waited until her scheduled appointment, who knows how bad the infection could have gotten. All that bacteria just festering & multiplying....it could have been much worse (hard to imagine it much worse than what we saw). Well, we were able to clean up the infection and they made a temporary splint for Jaidin's hands. She was not a happy camper! Poor thing was screaming and crying the whole time. We got x-rays and then little Jaiders finally got a brake. She usually SCREAMS and cries the WHOLE way to Primarys, and the WHOLE way home. Not after this experience! I wasn't even out of the hospital's parking lot before she was out cold! And, to my sadness, my baby still does not have her fingers back!!!!! That stupid (but necessary for healing and protection) splint!!


Jaidin enjoying her first bath in almost 5 weeks! We had to soak the casts for a good 30 minutes to make taking them off easier.



Jaidin's temporary splint. They're not very efficient. They frequently pop off and they are NOT easy to put back on!

ODDD

Since this blog is dedicated to keeping loved ones up-to-date on the medical status of our little jaider-bug, we would like to post some recent updates.

Yesterday was Jaidin's 9th eye procedure. Things are looking good. The pressure in her left eye is still higher than we want (20), but, it has not gone up since her last procedure. So, as long as we are maintaining and not increasing, her doctors are happy for now. Her right eye is at a 10, which is exactly where we want it to be.

Also, we got the results back from our most recent genetics test. It turns out that our little one has a syndrome called oculodentodigital dysplasia (oddd for short). It is an extremely rare condition, with only approximately 244 cases ever known. That's an incidence rate of one affected person in 12 million people. (For comparison, autism affects about 1 in 500 people & down syndrome affects about 1 in 900 people).

Here is a little summary of the condition: (you can skip this if it looks like too long of a read; it's just a little fyi on the condition).

Oculodentodigital dysplasia is a condition that affects many parts of the body; most notably the eyes (oculo-), teeth (dento-), and fingers (digital). Common features in people with this condition are small eyes (microphthalmia), distortions of the pupil, and other eye abnormalities that can lead to vision loss. Iris atrophy, glaucoma, and epicanthal folds are very common. The size of the eyes often interferes with learning to read and special eyeglasses are usually required. Affected individuals also frequently have tooth abnormalities, such as small or missing teeth, weak enamel, multiple cavities, and early tooth loss. Other common features of this condition include a long, thin nose, and webbing of the skin (syndactyly) of the fingers.

Other features of oculodentodigital dysplasia include sparse hair growth (hypotrichosis); hair that may be fine, thin, dry, or fragile; brittle nails; unusual curvature of the fingers (camptodactyly); syndactyly of the toes; small head size (microcephaly); and openings in the mouth (cleft palate, lips, or gums). Cardiac anomalies, including arrhythmias, murmurs, or congenital malformations (ventricular septal defect) are common in people with ODDD. Some affected individuals experience neurological problems such as a lack of bladder or bowel control, difficulty coordinating movements (ataxia), abnormal muscle stiffness (spasticity), hearing loss, and impaired speech (dysarthria). Other neurological problems include abnormal white matter, conductive deafness, and various kinds of paresis, spastic paraplegia, and difficulty controlling the eyes. A few people with oculodentodigital dysplasia also have a skin condition called palmoplantar keratoderma. Palmoplantar keratoderma causes the skin on the palms and the soles of the feet to become thick, scaly, and calloused.

People with ODD syndrome often have a characteristic appearance. Some features of oculodentodigital dysplasia are evident at birth, while many others become apparent with age.

ODD is generally believed to be caused by a mutation in the gene GJA1, which codes for the gap junction protein connexin 43. Slightly different mutations in this gene may explain the different way the condition manifests in different families. Most people inherit this condition from one of their parents, but in rare cases it can arise through novel mutations. The mutation has high penetrance and variable expression, which means that nearly all people with the gene show signs of the condition, but these signs can range from very mild to very obvious.


WELL, I know, it sounds like a lot. BUT!!! We are hoping that our little one has a mild case of the disorder (for her sake). Although she already has many of the symptoms listed, there are some major symptoms (like neurological) that we don't see any signs of. Regardless of what happens and what may come....we are absolutely in LOVE with our little baby! She won us over a long time ago! And of course I think I have the cutest baby in the world!! (what mommy doesn't??)

AND!!! 2.5 weeks down; 3 more weeks to go until baby gets her casts off!!!!!!!!!!!

5 Days & 10 pounds

That's 5 days and 10 pounds heavier!!! We just got back from a little Mexican cruise. Anyone who has been on a cruise knows exactly what I am talking about! The food is ENDLESS!!!!!! It was a little tough traveling with a baby who can't stand the sun, but we still had fun! Mommy and baby spent most of our time inside the cruise ship or under the balconies. When we ported, we hunted down an umbrella and (surprisingly) it did a great job of keeping the sun at bay.

So....here are some pics from our little adventure.....






Guess who discovered how to drink from a cup on the cruise ship! She loves it! Too cute and fun to watch! Mommy & daddy were kinda naughty. We let baby have licks and tastes of pretty much everything! We had some very messy moments!

Yes, it's been awhile....

Some lady really pissed me off.... So I lost interest in blogging for awhile. Long story, and probably uninteresting to most of you.

Anyhoo.....

Jaidin had her 8th eye procedure 2 weeks ago. The pressure in her left eye dropped a few meters, so for now, we are going to hold off on switching out the valves. She will go back in for another evaluation in about 1 1/2 weeks.

In bigger news............ Jaidin got her pinky fingers separated today!!!! We were soooooooooooooo nervous for this surgery, but it is over with now and we can sigh from relief! It has been one heck of a long day, and I know I should be sleeping right now, but of course I can't. The doc said that the bones in Jaidin's fingers were pretty fused together so he had to separate them out the best he could. She doesn't have all of her finger bones either, so he basically had to guess what went where (from the fused bones). He took a skin graft from Jaider's upper arm and sewed up her pinkys with that. The doc said he doesn't know if Jaiders has tendons or nerves in her pinkis and that she might not ever have use of them. He also said that her pinkys won't be very cosmetically appealing (i.e. scarred, bent, mishappen, etc...) But, we are nonetheless very happy to report that our little baby is doing great and that she finally has pinky fingers!!!! The doc put a screw in each pinky finger to hold it straight and bandaged her up--- all the way to her elbows (luckily it's a soft cast)! So it's sponge baths for a month and then (yes, that quickly) we get to take the casts off!! I can't wait to see my little baby with pinkys!!! What a weird thing to be so excited for!!

OK, I need to go and take advantage of my passed out child. She is still "out" from the anesthesia. (She was under for a little over 4 hours, so it should be in her system for awhile).

THANK YOU to everyone for all the prayers and support! Those prayers not only help out our little one, but they are a huge help to her parents too! They bring us such strength, comfort, and love. THANK YOU!!

(and a HUGE, SPECIAL THANKS TO AUNT COREY!!!! She has been overseas, fasting for our little Jaiders!) Thank you Corey! We love you!!

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.

Post Surgery Update

This is right after surgery......


I took these last 2 pics this morning. She is REALLY swollen! Poor thing. If you click on the pics, you can get a better view of how swollen she is.

Jaiders had the Ahmed Glaucoma Valve put in her left eye this Thursday. She is such a trooper. They put a smaller sized model in this time. This model is the infant model, so she will have to get a larger size put in eventually. She doesn't seem to be as fussy after this procedure, but she has been throwing up. We went for a post-op check up yesterday morning and the doc gave us the a-ok. We have an EUA (evaluation under anesthesia) scheduled for this Thursday -- to make sure that all is still well.

Look who's 3 months old!!!!! (well, a few days ago!)

Visit From Grandpa

Grandpa Dalton came for a visit this weekend! No one was able to calm little Jaiders down all day, but when grandpa came, she was an angel! She hasn't been that good with someone else holding her in a long time! Where has grandpa been all my (well, her) life?