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Archive for March, 2010

If you’re wondering how I could possibly have more updates for you in such a short amount of time, I am too! Life has been busy, but we like it that way.

Karis had her Barium swallow study this morning and aspirated (choked) pretty significantly on thin liquids (like a water or juice consistency) but did great swallowing nectar, honey, and pudding consistencies. We’ll continue to monitor her swallowing abilities because we don’t want her to aspirate and get pneumonia. Her little lungs aren’t strong enough to fight pneumonia on her own.

This Thursday we are going to have an evaluation to start speech therapy with Katy. Our goals will be to acquire some language and maintain swallowing abilities. We’re excited… yay for more therapy!!

Thanks to Dr. Omar Rahman and his assistant Holly (a dynamite genetics team, which I would highly recommend), Karis will be having an Impedance Study on April 8th at 7:45am. This study will measure Karis’ gas or liquid reflux into her esophagus through a pH probe that will be inserted down her nostril. The probe will remain in place for 24 hours and a little machine will be attached that will read the pH of her esophagus. Once the 24 hours is complete, I (mom) will take the probe out (because I have become very comfortable with putting things in and taking them out of my baby’s nose) and send it back to the hospital to be read. This pH probe procedure has to be done before Karis has her G-Tube inserted just to confirm that she does indeed have reflux and will need a Nissen fundoplication procedure while she is having the G-Tube placed.

The purpose of the Nissen fundoplication is to protect her from having any more reflux so that she does not aspirate. It is a procedure in which the surgeon wraps her stomach around the end of the esophagus to restore the barrier of the lower esophagus and prevent reflux. I’ve included a picture for my fellow visual learners 🙂

Again, the pH procedure is being done next Thursday just to verify that she needs this extra procedure (Nissen fundoplication) when she has her G-Tube put in. I’ll certainly keep you updated once we’ve set a date for the surgery.

Thanks so much for all of your enouragement and prayers!

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Hello everyone!

Karis and I went to Mobile this week to visit friends and family and so I could run the Azalea Trail 10K with my sister. Karis is becoming an excellent travel buddy.

She is doing extremely well with her feedings and has not thrown up since we were in Raleigh. (This is a vomit-free record!) We were having some trouble swallowing earlier in the week so I added thickener to her bottles. This made each feeding take the better part of an hour. We tried it again without the thickener and she hasn’t had any problems choking or coughing when she eats! Thank You Lord!

A day or so before we went to Mobile I started Karis on her afternoon dose of Neurontin (the pain medicine for neuropathy). I have noticed a huge difference in her disposition, especially in the evening when she is normally very fussy. She has been much more content, quiet, and complacent, indicating that she is not in as much pain!

Even though her swallowing issues seem to have subsided for the most part, Karis could still benefit from getting a G-Tube prophylactically (as a prevention measure/ before she needs it). We are bathing this surgery in prayer and asking God for wisdom each step of the way. She will be having a Barium swallow study this Tuesday at 9am which will act as a preliminary test for the surgery. I know that every breath she breathes is in God’s control and not a hair falls from her head without Him willing it to do so, but I’m still her mom and I’m still scared.

Please don’t forget to focus on prayers for healing tomorrow, March 29, (and even consider fasting with us) as we celebrate 9 precious months of Karis’ life!

I can’t thank you enough for your support and prayers. We NEVER get tired of hearing from you!!

Love,
Katie

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7 Month Photo Shoot

About two months ago Keegan McWhorter was sweet enough to come take pictures of Karis at my parents’ house. It happened to be one of Karis’ worst days… full of throw up and fussiness, but Keegan still managed to capture Karis’ sweetness. What I love about these pictures is that, though she wasn’t very happy, you can still get a good feel for Karis’ many expressions. I hope you enjoy!

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UNC Chapel Hill Visit

I’ve attached a “video” of photos I took during our trip to UNC so you could be a part of our travels.  Below the video I will go into a little further detail about the medical aspect of the trip.  Thanks for reading!!

Dr. Escolar and her team of Krabbe experts were incredibly kind and helpful in their assessment of Karis. They gave several recommendations and were very generous in the time they spent answering our questions. I’ll do my best to summarize everything for those of you who are interested!

What we learned about Krabbe
We knew Karis lacked an important enzyme (GALC), but Dr. Escolar helped us put the pieces together in a way that enabled us understand much better. Basically, the myelin that surrounds her nerves and transmits signals from her brain to her muscles is breaking down because she does not have the GALC enzyme. As the myelin cells die it becomes toxic to her body. This triggers an overactive immune response and leads to inflammation, which is quite painful. As the disease progresses, the brainstem becomes affected, inhibiting the body’s ability to regulate temperature and breathing. (Dr. Escolar, if you’re reading this and I said something inaccurate please correct me!)

What we learned about Karis’ nutrition
Due to the nature of the disease, Karis’ stomach doesn’t empty as fast as it should. This is one of the causes for her excessive vomiting and constipation.

Another feeding concern is that (due to myelin loss) Karis has a difficult time coordinating her sucking and swallowing when she eats. This causes her to cough and gag a little when she’s drinking from the bottle. Since she has a slower reaction time (again, because of the myelin loss), she doesn’t actually start coughing and gagging until the milk is close to her vocal cords. The problem with that is that some of the milk can end up in her lungs and eventually cause pneumonia. The best solution to this is to insert a G-tube into her tummy. This surgery would be a little more complicated to do for Karis because they would also do a procedure that would keep her from vomiting. As scary as it is to have her put under anesthesia, there is a certain anesthesia that is safer to use. It would also benefit Karis more in the long run to have the surgery done now, in the event that the disease does progress and it becomes imperative to have the surgery when it’s more dangerous.

Until plans are made for the surgery, they gave us samples of an amazing product called Simply Thick. It is a tasteless gel I add to her bottle that thickens the formula and keeps her from gagging when she eats (thus preventing aspiration and the entry of milk into her lungs). This is an excellent temporary solution that I’m happy with.

What we learned about medication
Dr. Escolar thinks it would be best to keep her off the Klonopin because it causes her to be so dazed. The idea is to maximize her alertness and ability to interact and minimize pain. She is starting Karis on three new medications. Baclofen will help with her tone and spasticity, Indocin will decrease inflammation, and Neurontin with alleviate some of the pain caused by neuropathy (meaning she won’t scream in pain when we pick her up).

What we learned about physical therapy
PT is extremely important for Karis! (Which we already knew (: ) She has the tendency to curl inward, which will eventually cause her chest muscles to become compromised and inhibit her lungs from fully expanding. It’s also important that we do everything we can to keep her spine straight because she already has some scoliosis. We learned about fun things we can get for Karis like a “Kid Cart” which is a special chair that will keep Karis upright to facilitate breathing and keep her trachea midline while she eats. There is also a large pillow called a VersaForm Pillow that sticks in certain shapes and will help her posture.

Are you as overwhelmed as we are?! I hope this helps those of you who were curious about our trip. Though there were some things that were tough to hear, it was a very beneficial trip. We were blessed to meet Dr. Escolar and get her input on how best to care for Karis.

Your prayers are needed and appreciated as much (if not more) now than ever. Please, please continue to “present your requests to God” on behalf of Karis. She’s absolutely delightful and we soak up every second with her… pray for millions more.

Soli deo gloria,
Katie

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Praise

Hi Friends =)

The majority of my posts are prayer requests, but it’s time for a Praise Post =)  For those of you who I haven’t told in person, Karis has had a remarkable few days.  She has been smiling FREQUENTLY, taking long/refreshing naps, eating all her required ounces (including solids) without any vomiting, and has been in the sweetest disposition with practically no fussies!!  I can’t express what a turn around this has been.  I truly can’t think of a logical explanation for these changes.  Please join us in praising the Lord for His goodness and kindness towards us to see Karis’ little personality come back and to see her so content.  We are truly, truly blessed. 

Today her occupational therapist made special splints to keep her little thumbs out of her palms.  She is supposed to be wearing them while she naps.  Here’s a picture I just took of her sporting the splints.  I love you all and am so grateful for you.  I will report back when we return from our trip to UNC Chapel Hill on Monday. 

Love,

Katie

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Update for March 9, 2010

We had great appointments yesterday with Karis’ geneticist and neurologist!  We are sticking with a whole Klonopin at night and starting her on Melatonin (if I can get my hands on some in liquid form) at night to help her sleep.  Her neurologist is also writing a prescription for the occupational therapist to make special splints for her thumbs.  (Karis will splay her fingers out now but still keeps her thumbs in toward her palms.)

There are still a lot of things to ask for prayer about!  First, for increased strength in Karis’ trunk and neck.  I am bound and determined for this baby to sit up by herself… but it’s kind of going to take a miracle =) 

Next, we are going to have Karis examined by a team at UNC Chapel Hill and we’ll be flying out this Sunday (March 14) and returning Monday.  Please pray for traveling mercies (especially Karis’ little ears) and for a very successful trip.  I’m praying we can learn more about the status of enzyme replacement therapy and that it will be ready sooner than anyone predicted.  On Monday at 12:30 EST they are going to attempt an MRI on Karis while she is taking a nap.  Pray that she will sleep unusually well for the hour they need her to be still.  I will not allow any anesthesia to be used, but I would really like them to be able to capture another MRI.

Finally, please pray for wisdom as we make decisions for Karis’ care, particularly for me, as I am with her 24/7 and can sometimes get overwhelmed with knowing exactly what do to when (ie. feeding, exercises, sleep).  Trevor also needs prayer to manage his time well with juggling school, work, and family.  He has never complained to me once, but this semester has had a particularly demanding amount of work.

Thank you, thank you for your dedication to our family.  Your faithful prayers, love, and encouragement help get me through the day.  Don’t forget to email me with your bracelet order!! =)

With hope,

Katie

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Bracelets Are Here!

Hello everyone!!

“Pray for Karis” bracelets have arrived and are ready to be shipped to your wrists!! They are the Lance Armstrong-type rubber bracelets except they are green and say “Pray for Karis.” As of right now we only have one size (a comfortable fit for Trevor), but I have ordered some smaller bracelets for ladies that should be here within 8-9 days.

Simply email the number you would like, which sizes you would like them in (small or large) and a shipping address to katealmy@gmail.com

Please also consider making a donation to help me cover the cost of the bracelets and shipping. They cost me about $1 each. Thank you!!

Katie Almy

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