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

Jaylie - 11 months 2 weeks - ACTH day 27

We are back up at Swedish for another 24 hour EEG. The Dr's are monitoring Jaylie to see if she is still having seizures form IS (Infantile Spasms). Jaylie has been doing this little shaking thing sometimes, and with the Dr's having to cut the dose of ACTH several days before the Dr's were planning to, the Dr's are concerned Jaylie did not get enough ACTH soon enough to completely stop the IS. So the Dr's have decided to do a 24 hour EEG watching Jaylie to see if there is anymore seizure activity going on. 

Depending on how today's EEG goes will determine if we need to change our IS treatment strategy or continue down the path we currently are on. Our current path is to wean Jaylie off the ACTH, meticulously watch for seizure activity and take a oral medication to help keep any seizure activity at bey. 

Jaylie's blood pressure has gone down today, yay! The Dr said there is usually a two week lag in regards to ACTH affecting Jaylie's blood pressure. If I understood the Dr correctly, this two week lag would explain why Jaylie's blood pressure shot up all the sudden and also why it has taken some time for her daily blood pressure to come down. We have to be consistent in giving Jaylie her medication and over time (roughly 2 weeks after we stop the ACTH completely) these blood pressure issues should subside.

We started weaning Jaylie off the ACTH the tuesday before last. The weaning process invokes cutting the by 25% each week until we are at a low enough amount to completely stop. Right now we are on the second week of weaning. We have another week, or two or three more of weaning Jaylie off the ACTH before we can stop the ACTH all together.

Jaylie has gotten really swollen while on the ACTH. So much so people who don't know Jaylie think she is a boy because her face has gotten round and her jaw very square *sigh*.

Jaylie's swelling has started to come down but is still significant. 

Jaylie is 16 lbs and 27 inches long now.

Jaylie will be 1 year old in less than 2 weeks - can you believe it!

As always, thank YOU so much for your prayers and support! They are a life saver for us! We really appreciate them all...

Nathan, Kristina and baby Jaylie

Here are a couple of pictures from today:

Jaylie - 11 months 1 week - Day 22 of ACTH injections

There has been quite a bit of activity in Jaylie and our lives since I last posted. The most eventful event being another stay at the hospital due to Jaylie's blood pressure being dangerously high and her behavior being despondent. The Dr advised these signs are very dangerous and that we would need to start lowering the ACTH does right away, which means Jaylie's chances of having the Infantile Spasms come back are a lot higher. And if the infantile Spasms come back we will have to start another set of treatments of which have additional side affects, some being long term like permanent loss of peripheral vision...

Needless-to-say this last week was more than challenging... It would firmly be placed in the low category (some days high, others low).

The good thing is Jaylie is back home again. She is almost back to her normal self though still really puffy and now taking two more medications to keep her blood pressure in check. 

We are now in the process of weaning Jaylie off of the ACTH.

Thank you so much for your prayer and support, it has been much needed and much appreciated!

Nathan, Kristina and baby Jaylie       

Jaylie - 11 months - Day 15 of ACTH injections

Jaylie is 15 lbs 14 oz and 25 ½ inches long. She is doing really well, happy, healthy and growing!

Jaylie had her follow up EEG yesterday. This EEG was the best EEG we’ve had so far. The nurses whom performed the EEG were great and we were out of there in record time, 45 minutes! After we went to the EEG appointment we headed over to the neurologist to have the neurologist take a look at the EEG and examine Jaylie to determine if the ACTH treatment is working or not. The neurologist was really pleased with Jaylie’s development on the ACTH. The Dr said she DID still see some slight abnormal brain activity, the same activity that is a contributing factor to IS (infantile spasms), and so the Dr would like to keep Jaylie at the maximum ACTH treatment for the next 10 days, then start to wean Jaylie off of the ACTH steroid. The Dr advised the weaning off process takes a couple of weeks (2-4 weeks). The Dr also advised Jaylie immune system would continue to be compromised for 4-6 weeks after we stop the ACTH (so if you’re doing the math that puts us at 6-10 weeks more of Jaylie’s immune system being compromised). The Dr advised due to the type of brain activity she is seeing, Jaylie will be at risk for seizures even after she is off the ACTH and therefore will start an anti seizure medication after we stop the ACTH. The Dr advised Jaylie may grow out of the seizure risk category but at least for the next 2 years she will need to take this anti seizure medication.

This info is a mixed bag for us. We are still processing it all.

On one hand we are completely ecstatic with the results we’ve seen! Jaylie eating food, rolling over, sitting up and developing is awesome, a direct answer to prayer!

On the other hand, Jaylie’s first birthday is less then a month away, Thanksgiving just after that, Christmas following shortly-there-after, all of which falling within the 6-10 weeks during which Jaylie immune system will be compromised meaning we CANNOT take Jaylie out to socialize with friends nor family this WHOLE holiday season. Not being able to take Jaylie out this whole holiday season and having to be hyper sensitive to cleanliness, not being around sick people and keeping Jaylie from being exposed to ‘bad stuff’ is a burden by itself. Add having to do this during Jaylie’s first birthday, her first Thanksgiving home and her first Christmas home and it becomes even more of a load to carry – in other words it just plain sucks…

The Dr acknowledged going through this process and having to care for Jaylie with a compromised immune system during this time of year does suck but it is necessary. This treatment affects the rest of Jaylie’s life and the overall quality of life Jaylie will have. A couple months of seclusion is a small price to pay to ensure Jaylie has the best quality of live possible.

A couple of things we will be praying for Jaylie for are: continued growth and development, complete healing from IS, 110% developmental recovery, complete protection while Jaylie’s immune system in compromised.

Thank you all SO much for your prayer and support!

Nathan, Kristina and baby Jaylie