Just Because...

I don't normally post "just because" but for whatever reason the Lord has placed on my heart the desire to make a short post today. Claire had an awful meltdown last night and had a seizure that lasted 4 hours....yes folks you read that correctly...4 LONG hours. Today our girl has spent all day sleeping and having minor seizures. We do not know what causes these minor setbacks but they occur very 2 to 3 weeks. The good news...it's temporary and we know our happy Claire will return to us soon. The bad news...it is easy to become discouraged and feel hopeless when there is so little we can do to comfort our daughter. While driving in the car today I had an extremely restless heart...feeling sad and slightly angry at this setback. Then...God placed a song on the radio...one I've heard a thousand times and never paid much attention to...but today...today God knew I needed to HEAR these words. "Your Hands" by Jj Heller...

http://www.youtube.com/watch?v=w-F6DGGF4Qs&feature=youtube_gdata_player

I hope the link I posted works...if not I pray you take the time to listen on YouTube.

God Bless

Misc Kid Pictures

Claire in a sundress on our first really warm day of the year!



Tristan practicing sitting up in the Bumbo Seat for the first time



Claire playing in her vision therapy "room."



Strong Boy...

Claire's 1st Haircut

We (mom & I) took Claire for her first haircut the last week in May...here are a few pictures that captured the moment. Claire did really well and I promise...it only looks like I'm torturing her...holding her head still is a trick. :)

Family Update- June 6, 2011

So once again I have fallen behind in keeping the blog up to date. The daily challenges of raising two babies is...well...challenging. Tristan is now almost 9 weeks old and he's growing like a weed. Tristan seems to be healthy and is reaching his milestones on time. We love having Tristan and enjoy the richness he has brought to our family. Tristan smiles and "talks" and is trying to figure out how to roll over...he has had success a couple of times but I think it was luck...not skill. :)

Jake is running 1000 mph at work and is gone 2 nights a week at least two weeks out of every month. We have struggled a bit adjusting to one income and Jake's bonus structure changed but as always...God provides! We also thank God for my parents who very graciously give up their time (& sleep!!!) to stay with me and help care for the kids while Jake is out of town. We can not really tell them "Thank You" enough.

For myself I have gone through some major ups and downs in the last 9 weeks. I love my children dearly but Tristan's arrival forced me to deal with feelings I didn't even know I would have. I love Claire and she will forever have a most special place in my heart...and I had to learn that it's ok for me to feel that way. I had to learn that I am not favoring Claire for loving her in the way I do...that I love Tristan just as much but in a different way. I just thought that I would magically love my children the "same"...but in fact I love them differently but EQUALLY. I struggled with loving Tristan and enjoying all of the "normal" baby things he does. I feared bonding with my son. However, with time and a TON of prayer I have moved past the doubts and fears and thoroughly enjoy my "job" as mommy!

And now...what you've all been waiting for...the update on Claire...

Claire is doing amazingly well...we are so very proud of the progress she is making. Claire is growing stronger and is learning to communicate...even if she doesn't use words. I would like to impress upon all of you that despite her disabilities Claire is extremely smart and she is far from lifeless. Claire has learned how to be mobile. Claire arches her back and plants her feet in the floor to scoot to where she wants to go. Claire also knows that if she scoots to someone's feet they will pick her up. Claire still lacks strength in her neck and arms but her legs and trunk are coming along. Claire will now "help" when we pick her up by stiffening her back. Claire has been given a therapy "room" to help with her vision development and after I put her in the "room" one time she decided she liked it and will go in her "room" voluntarily. Claire still eats baby food when she is alert enough but receives a majority of her nutrition through her g-tube. Claire is waking every day and we love it!!!

As her diagnosis goes...she still remains a mystery. We have finally received results from her skin biopsy and it was negative for the Complex 3 diagnosis the Dr's were hoping to confirm. So, that being said, they are still looking for a mitochondrial cause for Claire's seizures. There is a research study being conducted in Belgium and we have agreed to send her tissue to see if they can find anything useful. In the mean time we continue to treat Claire's seizures with medication and supplements. We just recently tried to wean one of Claire's medications and it did not go well. I think we will be able to put her at a lower dose but as of right now she will not be able to come off the medication.

As always we appreciate your love and prayers...keep them coming!

And then there were 4...

I again apologize for the delay in getting items posted to the blog...but we are now suddenly we are busier than ever! Please welcome our newest family member...

Tristan Wesley Hales
April 7, 2001 @ 5:07 PM
6 lb 13 oz
18.5 inches long



We could not be more blessed and look forward to the many adventures God has in store for us. We rejoice at the opportunity to raise yet another of God's children and now feel complete...as a family of 4.


Claire & Tristan...taking a nap.

Much love...the Hales family.

Claire's 1st year

Happy 1st Birthday Claire!!!

Happy 1st Birthday to my most precious gift from God!! We love our Claire...like you couldn't tell and cling to faith and hope that she will come out of her seizure disorder and be made whole!

Claire's 1 year MRI

I’m sorry for the delay in getting this posting out…it was a long, hectic week. After Claire’s neuro/metabolic appointment on Tuesday, she hit her “bad” streak of days. Claire spent Wednesday through Friday either sleeping or having some really tough times with her seizures. Thankfully today she woke up for a couple of hours and even gave us a couple of giggles…hoping this means she’s trending back to her “good” days of awake with alert time.

The results of Claire’s MRI were, for the most part, very positive. There was what we’ll call a “neutral” change…the MRI showed cystic changes in her white matter. What does this mean? Not too much. The white matter in our brains is the communication cells and there are some spots in Claire’s white matter that are “different” for lack of a better word. Basically we were told that this means there are about 12 more genetic conditions they could test for…all very rare and only 1 of the conditions would be treatable. We got insurance approval to test for the treatable condition and had some blood drawn Tuesday…the results will come back in approximately 6 weeks. The Dr.’s have left it up to Jake and I if we would like to test for any of the other conditions. At this point we probably will not opt to have any further genetic testing done. Each of the conditions left to test are extremely rare and the Dr.’s feel there is not a good chance the test will show anything since the rest of Claire’s genetic tests have come back normal. The only 2 benefits of a positive result from one of the tests would be “labeling” Claire and seeking out the handful of people worldwide that have the same condition and see if there has been any “treatment” that helped their condition. In other words…these conditions are just so rare it’s really not worth the time or money to complete the testing. The POSITVE news from Claire’s MRI is very exciting. Claire’s brain is growing & developing!!! The neurologist was not concerned with the structure or size of Claire’s brain. The neurologist was also happy to point out that there were no abnormalities or atrophy in Claire’s brain which is amazing due to her seizure activity! Praise God for his protection over Claire’s brain!!! Just to be sure nothing was missed and because 2 heads are better than 1 the Dr.’s from Doernbecher’s are sending Claire’s MRI results to Denver Children’s Hospital for their expert input. We hope and pray they feel as positive as the Dr.’s here did.
We are not making any medication changes at this time and we are waiting to hear back about whether we will make any changes to Claire’s supplements—if we do they will be minor. The neurologist was pleased to hear about the progress Claire is making in her therapy sessions and even got to see Claire awake and wiggling at her appointment. Claire’s neurologist was quick to point out that Jake and I have become “honorary” pediatric neurologist and pharmacists…which for the situation we are in is a nice compliment.

Aside from Claire’s “bad” days, she continues to impress us with her development when she is interactive and awake. Claire still gives us sporadic giggles which bring never ending joy! Claire is beginning to use her arms and legs against gravity and is almost ready to turn herself from her back to her tummy unassisted. Claire can also use her legs to move herself around a little bit. In fact, a hard lesson in parenting occurred the week before last. Claire is now mobile enough to fall off the couch! I cried…Claire didn’t even seem to notice. I think I am finally over my guilt of not watching her close enough and coping with the fact that I can never protect her 100%. Though it is miniscule in comparison…it must be what the Lord feels each and every time He sees us falter. I cannot imagine how much God hurts when we fall!

In 8 shorts days Claire will be 1 year old!!! Where has the time gone??? We are so thankful and blessed by Claire. The last 12 months were quite a journey and each day that is coming will hold something new. Our trials have been many but we are ever thankful and grateful for the joys in between the “dark” days. We continue to pray and trust that God will heal our precious Claire and that one day Claire will read this blog and understand God’s grace. We continue to thank you all for your interest in Claire’s story and for the constant prayer you provide. It is so helpful and encouraging to know that Claire is loved by so many!

I’ll close by saying our dear son will be here in a month or less. Despite a couple of bumps in the road the pregnancy was great. I am feeling the aches of late pregnancy and cannot wait for Tristan to make his appearance! We are now praying that Tristan will make his entrance into the world a little bit early. We will be tired for sure…but to have a healthy body back will make me feel much better.

God Bless and thank you!

Going to the pool for therapy

For the last 2 weeks, Claire has been able to go to the pool @ Salem Rehab for her physical therapy. Admittedly I probably enjoy it more than she does. Rehab keeps their pool a balmy 94 degrees and the anti-gravity on my pregnant hips feels awesome. Last week Claire worked really hard in the pool and had a great time...being very vocal and giving lots of smiles. Getting in the pool helped her brain realize she move her arms and legs against gravity even outside the pool environment. Claire has been lifting both her legs at hip level and putting her feet in the air even while lying down. We are so excited for this progress! Claire is also using her right arm against gravity quite a bit and beginning to use her left arm...again...huge progress for Claire! All of Claire' therapists are extremely excited by her progress in the last couple of weeks....as are we. Thank you for the continued prayers for our precious girl!


We have to put saran wrap & tape over Claire's g-tube before going into a public pool.


Claire all ready to go and get in the pool.

On a side note...Tristan is expected to arrive in 6 weeks...my how time has flown! With a couple of exceptions I have had another model pregnancy...however I am looking so forward to no longer being pregnant 18 out of the last 24 months is a bit much...but I just keep reminding myself that God's plan is ALWAYS the right plan. Tristan's arrival will no doubt be tough and a big adjustment but we couldn't be more excited to have our newest addition. With God's guidance, peace, and comfort we will get through our transition without too much anxiety.

Much love~The Hales Family

Brief update

Claire had an MRI done yesterday to see what her brain looks like at age 1 compared to her last MRI at 5 months old. We hope the MRI will shed some light on her seizure disorder and developmental delay but neither is very likely. We will have the results on March 15, when we next see the neurologist and metabolic specialist. We ask that you pray for tact when the Dr.'s give us the results of the MRI...we know Claire is behind and we pray and trust that God will heal our daughter, but it can be very discouraging when the Dr.'s give test results especially when they can not scientifically understand what is going on.



Claire all tuckered out after physical therapy last week.

Christmas Photos

I know...2 months late but better late than never at this point.


Claire was awake Christmas Eve. We so enjoyed our daughter being able to interact with us!





Daddy's girl. :)


Adoring my beautiful Claire. We dressed her up and took her to sit on Santa's lap.



About 23 weeks pregnant with our little boy...Tristan. Expected arrival date will be mid April 2011.

Update...Feb. 23

Claire is making some progress, though we are not without the occasional setback. Last week was rough as Claire went into a trend of having a 3-20 minute seizure every half hour with no awake time. We adjusted her meds on Monday and the turnaround was immediate. She has had long stretches of awake time the past couple of days and has been interactive in her therapy sessions.

We are encouraged by her slow progress. The muscles in her shoulders are getting stronger and we have very surprising moments of interactivity. Over the weekend, my Dad stayed with us. The weekend was pretty rough until Monday night when Claire suddenly got a case of the giggles. It was a treat for my Dad and quickly brought Rebecca and I to tears of joy--as it typically does. Rebecca tells me Claire has had several more fits of giggling since I've been out of town. We keep trying to capture that on video, but have yet to manage a well timed recording.

Claire began swimming pool therapy this week. This was an enjoyable session and appears to be an effective exercise format for her in addition to regular therapy.

A few weeks ago Claire had a vision test and was diagnosed with a Cortical Visual Impairment--this basically means that her brain struggles to decipher the visual world. We knew this already, but we hope her vision will in improve as she gets regular awake time and becomes more interactive with the world around her.

For those of you who have children with seizures or mitochondrial disorders, I would like to encourage you with some things that, strictly speaking, are not scientifically recognized. With Claire, we know that a high level of protein and regular bowel movements are key elements to her seizure control. There hasn't been many studies completed on this (likely because these treatment forms would be too cheap for anybody to wish investing research in to gain future profits). Honestly, I am not trying to be cynical about this, but the there are too few people in the fields of Neurology and Metabolic Genetics for them to go beyond profitable research and stem into practical research. That said, diet, therapy, and the monitoring of gastrointestinal activity really do help and can be confirmed by researching the many blogs of parents in similar circumstances.

A great lesson from our experience is that medicine should be personalized. Different people react to different drugs, treatments, and diets in different ways. This probably seems obvious. But the medical community is often blind to this and try to place blanket diagnoses, prognoses, and treatments. Push your politicians to repeal HIPA laws. That will allow developers of data analysis software to attack this problem on a large scale. Google has software in the works and so does IBM with their "Watson" computer-- they just need access to the large amount of data out there. Medical privacy is highly overrated and is just a way for Pharmaceuticals to block data that would reveal serious negative side effects of their products.

Meanwhile, never be complacent or inflexible. There is always hope. One day, our daughter will stand as living testimony to that. Thank you for your continued prayers.