Urology Appointment

We took Drake to Children's for an appointment on Monday. Once we arrived, I realized that I had confused my appointments and this was for his kidneys. I guess I was bound to confuse his appointments eventually; at least we were at the correct location. 

His appointment went well and we are set to have an IVP for his kidneys to check the function of each on the 26th of August. This will be an all day affair beginning at 8:30am and going through the afternoon. 

Tomorrow Drake has a followup with his pulmonologist, and we are excited for him to see how well he is doing without his oxygen. I'm sure he will want us to keep oxygen supplies on hand through another RSV season. We don't mind keeping them on hand for emergencies; it gives us a safety net.

Today was a day off from appointments; although, I wouldn't call it a free day. We have his Snowdrop program to complete daily. Jacob was here with us today and we looked like a daycare. I realized quickly that I would not want to work in or run a daycare. After looking into childcare facilities during my pregnancy and thinking they were outrageously priced, I am now seeing things in a different light. 

Kennedy is doing great, and she keeps herself and us laughing daily. She's a mess! She has become very interested in playing with Drake's hair. She doesn't pull it (we are watching very closely) but she plays with it gently. It is similar to how gentle she is when petting our dog.

One Day at a Time

When anyone asks me how we do everything, I tell them that we take things one day at a time. Although I lost track of my days and completely forgot to post a Friday blog. After we got the babies to sleep last night, we ate a late dinner and watched the movie "42". I honestly did not remember until I woke up this morning and realized it is Saturday. 

We are on Day 4 of Drake's seizure medications. We haven't seen any noticeable changes yet as far as side effects or seizure reduction. Tomorrow we will increase his dosage to twice each day, and at the end of the week he will be up to his full dose. On Monday morning Drake has a vision appointment at Children's in Dallas to check for Cortical Visual Impairment (CVI). Brian and I have already discussed that if the results show that Drake does have CVI, it will not effect our spirit. It will merely give us one more thing to work on with him. We are already doing visual stimulation daily, and we can add a few more therapies into this area of his program. Plus, I am in contact with several parents within Snowdrop who have children with seizures and children with CVI and I know they will be a great resource. I have a high school friend who has been following Drake and Kennedy's journey who contacted me, and she is a vision teacher. She has already offered to help with resources and input from her experience. We are so blessed! 

Kennedy is doing great and her hair has finally reached a length long enough for her first tiny ponytail! Now I need to get some tiny hair ties for baby hair because mine wasn't small enough to keep it in for a long period of time. She is a busy baby and into everything! She loves attention, which I'm sure is noticeable in pictures, but she also entertains herself really well, too. Yesterday while Drake's therapists were here, she played in her play-yard and seemed to be having a great time. On Thursday I went by Brookshire's to pick up some promotional items and a flash drive with pictures from her photo-shoot. She is going to love seeing these when she is older. 

Home Again!

Boy does it feel good to be home (well, at least to Gran & Poppy's) after our stay at the hospital overnight. I know a baby boy who was in need of a good bath and a momma who was in need of a hot shower. Drake's home-nurse, Lisa, is our lifesaver! If it wasn't for her, I would not have had dinner or breakfast...and possibly my sanity. We were reunited this evening at Gran and Poppy's with daddy and Kennedy. It was obvious just how much Kennedy missed us by her excitement when I saw her face! Then, she crawled over to Drake's carseat & used his foot to pull herself up. She knew just how Drake needed to be unhooked to get out of his carseat and she tried to help. I love the picture that Drake's home-nurse snapped of this precious moment! 

After Drake's overnight EEG, it was determined that he is currently having both infantile spasms and myoclonic seizures. His diagnosis is modified hypsarrhythmia. We will begin treating these spasms and seizures tomorrow with two different medications. We would have begun today, but none of the pharmacy's had the medications in stock. Drake's neurologist, Dr. So, is wonderful and is working with us to control Drake's seizures while not sedating him to a point where he would not be our little boy. We will need to work together closely over the next few months until we can figure everything out.

Drake will begin his medications of Depakote and Carnitor tomorrow with a gradual increase. This is just one more hurdle in our journey, and something we will overcome! His episodes have been happening more frequently lately and we are excited about knowing what these are and getting them under control.  

Finding the Good in the Not So Good

This has been a long week full of appointments. At Cranial Technologies on Tuesday Drake received his new helmet. He is tolerating it quite well; although, he can still get out of it during the night. He has it on when I put him to bed, but some time during the night he works his way out of it. Our goal is to keep him in it as much as possible, so we will keep working toward full time wear.

On Wednesday we saw the neurologist. He was pleased with Drake's progress and happy with the tracking he was seeing. We work with Drake daily on tracking and visual stimulation in a darkened room with glow sticks and lighted toys (part of his Snowdrop program). We videoed an episode of eye flutters to show the neurologist because Poppy has been concerned that these could be seizures. The neurologist agreed and has scheduled an EEG on Monday at Medical City. We will check in at 10am and be there the full day and possibly the night. If they get enough readings during the day, we will be able to go home Monday night. Kennedy will be staying with Gran while we are busy at the hospital. As scary as seizures sound, we have always known this would be a possibility. If these are seizures, the good news is that once the type is identified, a treatment plan will be in place. 

Thursday's visit was with the developmental doctor and this was a follow up for both babies. Kennedy is doing great and will not go back for another 9months. She scored 11-12months in every category. Her doctor was surprised at how quickly she is catching up to her corrected age. Drake scored 3-4 months in every category, but said she sees slow and steady progress. What I hear is "progress" and yes, we would agree! His tracking did not go well with this doctor. The room was not dark like it was with the neurologist and his tracking abilities were sporadic. This leads the developmental doctor to believe that Drake has Cortical Visual Impairment (CVI). This is a common problem with brain injuries, and it is a problem in the brain rather than the eyes. It basically means that he can see but not necessarily all of time. There is a connection problem, like a short circuit, that is interfering. We will be going for further testing to determine if this is indeed the case. This is not the first time this has been mentioned to me by our doctor, and the first time I did not handle the news very well, but this time was different. Snowdrop has provided the hope we have been looking for, and I have actually spoken with parents who were told their child had total cortical blindness and are now seeing thanks to their Snowdrop programs. 

These follow-up appointments used to be quite daunting for us. It is difficult to listen to medical professionals who merely see things in black and white. We are gray...very gray. I get frustrated when I feel that they do not see the potential in Drake that we do, but they see him for an hour every few months and he doesn't exactly like to strut his stuff on cue. We, on the other hand, see the day to day improvements. 

Out & About

This weekend we experienced a "family 1st"...we ventured out to Sam's for a little bulk shopping! One can never have too many clorox wipes. Drake and Kennedy both seemed to enjoy our little outing, and I think this was a good experience for the 4 of us. 

Now we have begun a very busy week of appointments! Today Drake had one at Cranial Technologies to receive his new helmet. This helmet seems to be a much better fit so far! Tomorrow Drake has an appointment with his neurologist, and on Thursday both Drake and Kennedy will see their developmental doctor. Finally on Friday, Drake has an appointment with his chiropractor. With Gran & Poppy out of town this week, we are extremely grateful for Aunt Mere taking care of Kennedy so that we don't have to drag her along to each appointment. We know she is much happier with her Aunt Mere & cousin Jacob while we are at these appointments. 

We are still on our 1st day of the new helmet, but so far Drake seems to be tolerating it better than his first helmet. Don't get me wrong, he isn't happy about it, but we are hopeful he will tolerate it. He is not supposed to sleep in his helmet tonight, so the true test will come tomorrow night. 

Snowdrop

We are so excited to be a couple of weeks into Drake’s new program! His program is provided through a group located in the UK called Snowdrop. Snowdrop for Brain Injured Children provides programs of neurodevelopmental stimulation for children who have a wide variety of diagnoses, such as cerebral palsy, autism, ADHD, learning difficulties, developmental delay, PDD and many more. They have chosen the name Snowdrop because it is a symbol of hope through adversity, which is a good metaphor for the families and their children who are aided through the individualized programs. Snowdrop is also one of the first flowers of the year which despite the cold, frost and sometimes the ice, fights its way through these hardships to flower. We already know that our little Drake is a fighter, so this is a perfect fit! 

 

The founder of Snowdrop was previously a chemist who switched directions with his life following the birth of his son with ‘catastrophic brain injuries’. He and his wife, just like us, were told that his son would not live past his 2^nd birthday. Also, like us, they chose not to accept this and through furthered education and research, he and his wife defied the odds and greatly improved the quality of their son’s life. Their son, Daniel, lived to be 16 years old and was able to live a much better life thanks to the efforts of his parents. They have devoted their lives to helping other children and their families, and they began the Snowdrop program in 2007.

 

We are participating in the distance program, as we obviously cannot travel to England at this time; however, we would love to someday for one of his reassessments. I communicate with the founder, Andrew, on pretty much a daily basis thanks to the internet. For Drake’s evaluations, we send videos and answer questions since we are not there in person. Every 5 months a reassessment is completed, and his day-to-day program that we carry out at home is adjusted. We know that this is a long journey, but we are dedicated to his daily exercises. This is in addition to Drake’s regular therapies.

 

I am a part of a parent group who all have children in the Snowdrop program. Each child has an individualized program written to meet their special needs, and I have enjoyed communicating with parents from around the world. I am one of the only parents in the US; therefore, I am adjusting to being referred to as Drake’s “mum” and being told that he is a “handsome little chap.” One of the other parents said that the Snowdrop program is a long term project. We are preparing for an assault on Everest, which has to be at least a five year project! We haven’t left our own country yet, just doing a few limbering up exercises down country lanes and the snow-capped mountains are a long way off, in another continent, but we will get there! Yes, Drake, we will get there!

 

Flashback

One year ago today: 

July 9, 2012 - Still Holding On

Last night was the longest night of our lives. I knew it was serious by the look on the nurses faces...it was a look of seriousness and controlled urgency. Annie and I did get some sleep from 4 am to 8 am and are trying get rest but it is difficult to leave their sides.

Drake is in a dangerously life threatening position. His kidneys have completely shut down and his lungs are struggling to keep up. The cultures have not come back positive for infection since the 6th,  so the infection looks to have cleared. The kidneys are our concern. His potassium levels were at life threatening levels all night. They have given him every medicine known to reduce potassium and to try and get his kidneys to function again. The potassium is still really high, but has been stabilized; however, he has not produced urine or bile in over 24 hours. The doctor said that if his kidneys do not begin to function, his heart could go into arrhythmia that cannot be stopped. 

We are hoping and praying so hard for his recovery. We have both sides of our family here to join us in prayer. Our pastor joined us today and just now Drake and Kennedy were baptized by our pastor and congregation of thousands across the world in prayer. Your prayers have helped Drake and Kennedy in their fight. Please take a moment to ask God to help his little kidneys start working again. Drake's fight is not over. Mommy, Daddy, and Kennedy are by his side.

One year later:

We are beyond thankful for the thoughts, prayers and support we have had over the past year! Since the 4th of July, we have all been thinking back to where we were one year ago. I read this post tonight after dinner to my family and even though 12 months have passed, the emotions are still just under the surface. Brian and I can't even read the words without tearing up. That gut wrenching week felt like an eternity, yet time has flown by since we have been home. Look how far our tiny babies have come in one full year and all of the progress they have made! Defying the odds again and again. Don't worry...our little Drake isn't finished proving people wrong! We may have our work cut out for us, but with dedicated practice comes perseverance. 

Drake and Kennedy have enjoyed this week at Uncle Aaron and Aunt Mere's pool. I have enjoyed it, too! As I have mentioned before, Drake is not a fan of change. The transition into the pool initially was not something he enjoyed, but once he was settled in, he completely relaxed. He even took a nap! I'd say that means he was very relaxed. And Kennedy...what can I say...she loves the water!