Jaylie - 19 months - Vigabatrin Month 6 (Last month)

Jaylie is doing well, still growing and developing. We are still working with Jaylie on walking, talking and eating. Jaylie is not eating anything by mouth. We are hoping this will change when once we completely taper off the vigabatrin here in a couple of weeks. The plan is to continue on the zonisamide. The neurologist advised tapering off the vigabatrin has a 50/50 chance of seizures returning. A 50/50 percentage is not a good percentage when you are referring to seizure activity... Thus far we have not see any seizure activity pop up, praise God!

Jaylie is continuing her weekly occupational therapist and an oral therapist visits.

Jaylie is motoring around the house (crawling) and pulling her self up on everything we let her.

There is no real major news to report, which is actually a really good thing :). It is nice to have a somewhat 'normal' period of time without any major events happening, praise the Lord!

The eye Doctor wants Jaylie to wear some corrective eye glasses, if she will wear them, to address a slight issue with her right eye but said it would not be a major issue if Jaylie decides she does not want to wear them.

Please continue to keep Jaylie's development, growth and health in your prayers. We are praying God would complete heal Jaylie of all seizure activity.

As always, thank you SO much for your prayer and support!

Nathan, Kristina and Jaylie

Here's a new pic with Jaylie's new frames (the lens' are on order).

Jaylie - 18 months - Vigabatrin Month 5

Jaylie is doing well. She is crawling around a lot, very talkative, making lots of different audible ah, ha, ma, na, da kind of sounds with an occasional dada, mama, nana but no real word association yet, that I have seen.

We went to Children's hospital at the end of April to switch over Jaylie's care to Children's. The visit went very well. The Dr's are great and very through. We are really pleased with Children's.

While we met with the neurological Dr at Children's, he gave us some very good advice and some encouraging reminders.

One of the key points I took from the neurologist at Children's was one of his comments on Jaylie's two week intensive therapy session and the results we saw during the session. The Dr advised not to take the two week intensive therapy sessions results as a sign advising we need to have Jaylie in therapy very day to see results. The Dr advised studies have shown what we are currently doing (Jaylie's twice weekly therapy sessions) were more then enough and exactly what we needed to be doing. What I found amazing about these recommendations and advise is it came unsolicited -- Kristina nor I had any discussion about Jaylie's intense therapy sessions nor discussion how we felt about them nor how these events made us feel post completion of the session. The Dr just knew what to say and what issues to address before we even knew they were there -- that is really cool to me and the sign of a someone whom is excellent at that they do.

The Dr advised not to compare Jaylie to other children of the same age. The Dr explained it this way, Jaylie is on her own track in this race. While racing, all the other kids are traveling 100 miles an hours, hitting growth and developmental milestones at certain intervals due to the speed being traveled. Jaylie is hitting those same developmental milestones but at her own space, say like traveling at 60 miles an hour instead of 100 miles an hours. The Dr went on to explain he is more concerned with children that completely stop developing, or start to go backwards. The Dr stated growth and development is a good thing no matter what the pace may be. This feedback from the Dr came not because we expressed any concern with Jaylie's development but came from the Dr's insight into these issues and experience. This information was another very valuable piece of information and very helpful perspective to adopt.

These two keys pieces of information (Jaylie's therapy scheduling and developmental path) were two major issues of which were not at the forefront of my conscientiousness. They were there amongst all the other day-to-day issues we face. The neurologist strategically chose these issues to address at the perfect timing before any negativity or wrong thinking sunk in and started to root. The meeting with the neurologist was very good and crushed some ill thinking before it even started, which I find very cool and awesomeness -- thank you Jesus!

At the end of April, the neurologist advised, from what he could see of Jaylie's development, overall she had matured into the 6-9 month range. He was pleased with her growth and development and encouraged us to continue to do exactly what we were doing with Jaylie.

Jaylie is crawling all around the house now. She is crawling up to things and pulling her self up to stand. She is still a really happy social baby. She's got ton's of teeth. Her attitude and personality is developing more and more each day. She gets frustrated with some not being able to move things or herself around into the positions she wants to at times but is a fighter and ultimately gets where she wants or moves on to something else.

Jaylie is scheduled to end the vigabatrin treatment in June. We meet with the neurologist at Swedish within the next couple of weeks to do another EEG and discuss or treatment plan for the infantile spasms. At this time Jaylie is doing great, growing and developing and seizure free, praise God!

Thank you so much for your prayer and support! It is priceless and most-of-all, effective! Thanks again!

Nathan, Kristina and Jaylie

Some recent pictures:

Jaylie 16 months - vigabatrin month 4

Hello, it's been a while, my apologizes. I started this blog towards the end of March but as many of you know, life moves so fast - days, weeks and months flash by before you realize it...

Jaylie is doing awesome considering she was born @ 1lb 3 oz almost 17 months ago! As a reminder of how good God is and how amazing He is, He has helped us to battle extreme prematurity, Infantile Spasms (a catastrophic form of epilepsy) and cerebral palsy just to name a couple of major mountains we've face in the last 17 months - wow, yah!?!


What's happening now:

Things are well overall :). We are overjoyed to report Jaylie is now crawling, yay! Jaylie participates in physical therapy at home with a therapist twice a week to work on oral eating and mobility. Jaylie was recently selected as a candidate to participate in a two week long daily therapy training for therapists. This event happens once a or twice a year (I don't recall off the top of my head) during which top Dr's and therapists come in and train our local therapists on new training techniques. During this two week therapist training session Jaylie learned to crawl. We can't thank the therapists enough for all their hard work these last two weeks - most of all we can't thank grandma Debbey enough for taking Jaylie and working with Jaylie during therapy for the last two weeks. This last two weeks of training has been a priceless gift. Many many thanks to all that participated and most of all thank you Lord for giving us the opportunity and helping Jaylie grow and develop!

Jaylie's bubbly personality is starting to come out more. She laughs and gives out full faced smiles all the time. She was the life of the therapy sessions with her positive and infectious laughter and smiles.

Jaylie is not eating yet but is starting to play with solid foods biting and chewing on them - go Jaylie go!

We recently switched a majority of Jaylie's Dr's over to Children's in Seattle based on Dr's recommendations. Our first visit to the children's GI Dr was a huge relief. The GI Dr advised as to why Jaylie has been spitting up, explained all the current available surgeries and medications to address the problem and them explained why we did not need to do any of them. He explained the reason Jaylie has reflux the way she does is due to her stomach not being stretched out due to her not eating and the sphincter muscle at the top of her stomach not contracting to hold her food in. The Dr explained this is a common problem even adults face of which Jaylie should grow out of over the next couple of years, yes years. The Dr said it usually take 2-3 years to completely overcome this problem and that the reflux will start to get better after Jaylie starts to eat solid foods.

The GI Dr adjusted Jaylie's night intake through the feeding pump we have her on to give Jaylie more food at night and less volume during the day. This adjustment has helped quite a bit with Jaylie spitting up.


Medications:

Jaylie is on the vigabatrin, zonisamide and a couple anti acid medications. The vigabatrin has worked well to control the infantile spasms. We are slated to taper of the vigabatrin in May and June.


Conclusion:

Overall things are going well. We thank you for your continued prayer and support. We really value and appreciate your prayer and support! We could not do it without you!

Nathan, Kristina and Jaylie


PS: I mentioned in my last blog my dad was battling colon cancer. He went through surgery during which the Dr's were able to remove the cancer. He now is going through 6 months of chemotherapy. He is in good spirits and doing as well as one can. Thank you for your prayer and support!

Here are a couple of new pictures of Jaylie:

Jaylie - 15 months - Vigabatrin month 2

Since our last blog Jaylie has been doing well. Jaylie is growing, maturing and has been seizure free (yay!)! To date the vigabatrin has done an excellent job of normalizing Jaylie’s EEG patterns. Jaylie's daily medication intake has been dropped to only two medications a day (not counting prescribed vitamins and such ), which is awesome seeing how in December we had 11 daily prescriptions to administer! The routine number of Dr’s visits we attend has been cut down from 3 times a week to monthly and even quarterly for several of the 8 + Doctors Jaylie is currently being seen by. Right now the plan is to continue the vigabatrin until June, slowly introduce zonisamide back into Jaylie’s system and then continue on the zonisamide after we stop the vigabatrin in June.

Jaylie is still not eating regularly orally, but is eating very tiny amounts of whatever we can get her to eat. We are making progress slowly.

Jaylie is starting to get up on her hands and knees and rock around, she has become a lot more vocal and likes to move around lot though she has not become mobile yet. Jaylie sees an occupational therapist twice weekly to help with movement, oral feeding and development.

Jaylie has lost a little bit of weight, which has caused per pediatrician to become concerned and so the pediatrician has bumped up Jaylie’s daily calorie intake. It is not a major weight loss, just something we are keeping our eye on at this point.

Jaylie has had to have a couple follow-up EEG’s and one MRI over the last couple of weeks to monitor her brain activity while on the vigabatrin. The EEG’s have improved and the MRI did not show any ill effects from the vigabatrin. While reviewing the MRI results, the neurologist noticed Jaylie’s hippocampus (part of the brain that controls short and long term memory) was not completely developed which is concerning and can cause developmental problems if the hippocampus does not develop completely. The neurologist is not overly concerned at this point but is concerned none-the-less. Part of the underdevelopment of Jaylie’s hippocampus has to do with her being extremely premature and so the neurologist is going to do another follow-up MRI in 6 months to check Jaylie’s brain development again.

Please keep Jaylie’s developmental progress in your prayers. We have a long way to go and many more years of work to ensure Jaylie has the best quality of life possible. Also, my father (Michael) was diagnosed with stage 3 colon cancer in Dec. He underwent surgery in Jan to has a cancerous mass removed. He is recovering well and will be staring chemotherapy in an effort to completely eliminate the cancer from his body. If you would include my dad (Michael) in your prayers as well we would appreciate it!

As always, thank you so much for all your pray and support! We would not have been able to make it to this point without your prayer and support. Thank you!

Nathan, Kristina and Jaylie

Jaylie - 14 months old - vigabatrin day 44

Happy New Year!

Overall Jaylie is doing really well. The vigabatrin has really been affective. Jaylie's brain activity has almost completely normalized. Jaylie has continued to be seizure free while on the vigabatrin. We will continue to use the vigabatrin for the next 6 months or so.

Jaylie has lost all of the swelling that happened during the ACTH use, has leaned out a bit and gotten longer. Jaylie's appearance is changing rapidly every couple of days. 

Jaylie is still not eating orally and still spitting up a bunch. We are working with Jaylie to get her to start eating orally again. Progress has been pretty slow with the oral eating stuff. 

Jaylie, myself and Kristina have been off and on sick from around Christmas time until now but we are getting better. 

The occupational therapist is working with us and Jaylie to help Jaylie with eating and movement. We are working with Jaylie on sitting, standing and crawling. Jaylie is able to sit and stand with support but is still not crawling or mobile yet. 

Jaylie is laughing, moving around, playing and a lot more vocal making dada and other short syllable sounds. 

The last couple of weeks has been pretty crazy and intense with the holidays and such. Though we thoroughly enjoy the holidays, I am glad to be in the new year and working on establishing a new 'normal'. If you recall, this crazy roller coaster of seizures and an Infantile Spasms diagnosis started at the beginning of October. We were not sure what the holidays were going to be like with Jaylie being sick and the medical treatments we had to go through... We are happy to be starting a new year healthier then we ended the previous year. It feels like we have turned a new chapter and are on working towards establishing a new day-to-day routine. 

Thank you for all your prayer and support! We really appreciate you all!

Nathan, Kristina and baby Jaylie

Jaylie – 1yr 2 weeks – Vigabatrin Day 3

I apologize I have not been able to write an update until now. Things have been very busy both due to the holidays, Jaylie’s first birthday and the Infantile Spasms treatment.

Despite Dr’s orders, we HAD to have a very small celebration for Jaylie’s first birthday. Jaylie’s party was very small but perfect. Here are a couple pictures:






Thank you everyone whom contributed to Jaylie’s first birthday! She had a fantastic time. We will never forget it! Thank you SO much!

We have stopped the ACTH treatment. It has been a bitter sweet departure from ACTH. Though the ACTH suppressed Jaylie’s immune system, caused extremely high blood pressure and major swelling, ACTH really jump started Jaylie neurologically. On ACTH Jaylie’s seizures stopped, started eating orally, sitting up, holding a bottle and feeding herself, rolling over, stopped spitting up and overall a lot more alert.

Since tapering off the ACTH Jaylie has digressed a bit. Jaylie has had a couple of seizures, though not as intense as before and not on a daily bases. Jaylie has stopped eating orally parting because we started giving her some medication orally she really does not like and partly because we have stopped the ACTH. Jaylie has also started spitting up, though not at the same level as before the ACTH she has started spitting up again. Though Jaylie has digressed a bit, she is still doing well and progressing forward.

One of the positive things that also came out of the ACTH use was we were able to transition Jaylie of the nightly feeding pump to just feeding her throughout the day, yay!

Due to the ACTH not completely stopping the seizures and not resolving the abnormally EEG patters the neurologist has started another treatment Vigabatrin (Sabril).

Vigabatrin does not have the same side-effects ACTH does and can be used as a long term treatment unlike ACTH. Long term use of Vigabatrin can cause permanent loss of peripheral vision though this vision side-effect does not happen within all patients it is a possible side-effect. The Dr will know if the Vigabatrin is effective within the first 2 weeks of use. We are currently on day 3 of the Vigabatrin treatment.

These last couple of weeks have been bittersweet - bitter with Jaylie’s regression, sweet with making it to Jaylie’s first birthday and first Thanksgiving.

We are looking forward to the next couple of weeks. Looking forward to having Jaylie’s first Christmas as home and looking forward to seeing positive results with the continuation of Jaylie’s Infantile Spasm treatment.

Please keep Jaylie in your prayers. We are praying Jaylie’s growth and development will continue to move forward, that the Infantile Spasms treatment is effected in stopping these seizures and normalizing Jaylie’s neurological patterns.

Thank you SO much for all your prayer and support! We could not do this without your prayer and support!

Merry Christmas!

Nathan, Kristina and Jaylie

Jaylie - 11 months 3 weeks - ACTH day 36

Jaylie has been happy and active this week. Jaylie has had a couple of mild seizures but nothing major and even more important, Jaylie is not having seizures on a regular nor daily bases.

Though Jaylie is doing well, she still has an abnormal EEG pattern and intermittent seizures associated with Infantile Spasms. What this means is we need to try another method to bring the EEG patterns and seizures under control. There are several options available to address the irregular EEG patterns and IS (Infantile Spasms) related seizures. The two of options we are looking at are Vigabatrin and the ketogenic diet. Any medication approaches we take to address IS will have serious, some being permanent, side-effects. You can read about all the currently documented medications and treatments for IS here: Infantile Spasms (BTW, this link is the most comprehensive site on Infantile Spasms I have found thus... )

We meet with the neurologist on Monday to discuss the next steps treatment steps we are going to take to treat the IS Jaylie is experiencing.

Jaylie's blood pressure is still high, high enough to be seen several times a week by the Dr's and to have to take two different blood pressure medications daily. Though Jaylie's blood pressure is high, it has come down just a coupe of points over the last weeks which is good. We are slowly decreasing the amount of ACTH we are giving Jaylie daily. I believe we have roughly another week of the ACTH and then we are done. If you recall, the pulmonary Dr advised the ACTH has roughly a two week ramp-up period before the individual starts to experience high blood pressure. The pulmonary Dr also advised it takes the same amount of time (roughly two weeks) for the high blood pressure side-effect of ACTH to ware off. So hopefully these blood pressure issues we are battling right now will be complete resolved three weeks from now.

We reach a major mile stone this Thursday. This Thursday will be Jaylie's first birthday! Can you believe it!

It's been 64 weeks (roughly 1 year and 2 months) since the Dr's advised Jaylie's placenta was failing and she most-likely would only last a couple more days and then pass away. Well, here it is 434 days later and Jaylie's very much alive, growing, learning, maturing, developing and living! Within the last +400 days, we have witnessed true miracles and awe-inspiring gifts from God! The icing on the cake being we get to celebrate Jaylie's 1st birthday on Thursday - is that amazing or what!?! God it good! Thank you Lord!

Jaylie's immune system is still suppressed due to the ACTH and so we are not able to do the typical things you would do for a 1 year birthday party but just the fact we have made it to this point is worth celebration is whatever capacity available!

Jaylie is making good progress with eating on her own, making noises, rolling over, sitting up and other motor skill movements.

Jaylie is currently 16 lbs 10 oz.

Over all this last week has been a good week. We are coming to the close of the ACTH treatment and are pleased with the overall results we have experienced thus far.

Please keep us in your prayer as we continue on with treating Infantile Spasms (IS) and working with Jaylie's growth and development.

Thank you all for your prayers and support! They are greatly appreciated and needed!

Happy Holidays!

Nathan, Kristina and baby Jaylie