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

Jaylie - 11 months - Day 10 of ACTH injections

Jaylie is doing well, still eating like a big girl and has been pretty much event-less (no visible signs of seizures).

This is day 10 of the ACTH injections.

We have our first follow up visit with the neurologist on Friday. During the visit to the neurologist on Friday, they will do another 1-2hr EEG where they will monitor Jaylie's brain activity to see if her brain activity is still showing signs of seizures.

We have had to take Jaylie in to her regular pediatrician for follow up visits a couple of times since we started the injections to have her blood pressure and blood sugar level - all is well so far.

Jaylie's progression this last week has been amazing! Praise God!

As these times are wonderful and memorable, I am reminded of the wisdom our primary Nurse in the NICU gave us the first day we arrived. She said "Your journey here is going to be full of peaks and valleys -- Really high highs, and really low lows". This wisdom has continued to be played out in our lives. Two weeks ago we were at a really low low and now today a really high high.

We thank and Praise God for the high highs and getting us through the low lows!

Being locked up in the house (due to Dr's orders in not exposing Jaylie to the work due to her compromised immune system) we were not able to church on Sunday so I turned on the TV and looked for a good church service to watch. I ran across this one #478 – Mountain Moving Faith by Joel Osteen. This message spoke right to my heart, encouraged me and reminded me how effective faith in Christ is!

Thank you all so much for your prayer and support it is a live saver!

Nathan, Kristina and baby Jaylie

Jaylie - 10 months 3 weeks - Day 7 of ACTH injections

Jaylie is still progressing very well on the ACTH steroid. It’s like the steroid has kicked her development into overdrive, woot woot! The neurologist has advised these IS (Infantile Spasms) seizures may have been going on for quite a while of which may have been stunting Jaylie’s development. Since Jaylie started the ACTH she has grown and developed leaps and bounds! It’s pretty awesome to witness.

Literally overnight, Jaylie has decided she wants to eat everything in site! This coming from a kid whom has shown almost no interest in eating anything her entire life. Now we can’t stop her from eating! She wants to eat all the time and eat everything! Check her out:

http://www.facebook.com/video.php?v=449328114188

We are still seeing very slight seizure activity. The neurologist has advised she would like to see absolutely NO seizure activity at all before starting to wean Jaylie off of the ACTH, so this means we will most-likely be on ACTH for at least another 2 weeks (one more week at a higher dose to kill the seizures and another week of weaning Jaylie off the ACTH).

Please continue to keep us in your prayers. Jaylie immune system is high compromised while she is on ACTH and with flu season just around the corner we need God’s projection from being exposed to day-to-day life. We are doing the very best we can to limit our exposure to sickness, viruses, bacteria, ect but ultimately need God’s protection to keep us all safe and Jaylie healthy, developing and recovering.

As always, thank you all so much for your prayer and support! It works and is appreciated!

Nathan, Kristina & baby Jaylie

Jaylie - 10 months 3 weeks - Day 5 of ACTH injections

Jaylie is doing really well on the ACTH so far and really well over all considering. If you recall, I wrote advising our prayer for Jaylie was during this time not only would the medication be affective in treating IS (Infantile Spasms) but that God would provide Jaylie a 110% recovery -- well I can say God answers prayers! Not only is Jaylie doing very well on the ACTH medication thus far (with the spasms decreasing more and more each day) Jaylie is developing over all!

Over the last week Jaylie has decided she wants to sit up now, drink from a bottle and scream all of which she was NOT doing last week!

Here's a bottle holding video (I will spare you from the screaming video) :

http://www.facebook.com/video.php?v=448452784188

Please continue to pray with us as we continue on with this treatment.

Jaylie has been really fussy (a known side effect of ACTH) but is really blossoming.

Our prayer is Jaylie would continue to heal, grow and develop through this time. And that we all would stay healthy, not get sick and not suffer any setbacks if possible.

Thank you for your prayer and support!

We could not do it without you!

Nathan, Kristina & baby Jaylie

Jaylie - 10 months 3 weeks - Day 3 of ACTH injections

We are on day 3 of giving Jaylie the ACTH shot each morning. Jaylie is responding well so far. Her seizures seem to be less frequent and less intensive. 

Part of the side effects of the shots are irritability of which WE are definitely experiencing.

I have to say, injecting Jaylie with the ACTH gel is a slow painful process for all. Giving these injections to your own child is the worst experience I've had so far. 

Going through all these events this last week has been extremely taxing on all of us exacerbating the cracks and imperfections in us. Your prayers and support are priceless!

People ask how we make it through these times, I immediately respond stating we would not have made it through these times without the love, prayer and support of our support group, our friends and family ( all of you! ). You all have really made an irremovable impact on our lives, thank you!

I've mentioned this before ago but feel it is worth mentioning again, Kristina's mom has been an absolute live saver! Debbey has a gift for dealing with children and additionally a gift for children that have special needs. Debbey has many priceless years of experience working with children to over come adversities. Debbey's impact on Jaylie's life has been profound. We are appreciative of the work Grandma Debbey does with Jaylie on almost a daily bases. Being new parents we have no idea what we are suppose to be doing. And being parents of a child that needs extra special care as our first child puts us at an even more of a disadvantage. Debbey's experience and support has been a true God send for us. Debbey has gone above and beyond the role of Grandma and has propelled herself into Super Grandma status! Thank you Debbey! We love you!     

Debbey is only one of the many people ( both friends and family ) that have provided us and continue to provide us support. 

Thank you all! We do see and acknowledge your giving and sacrifice for Jaylie. Thank you thank you thank you!

Nathan, Kristina and baby Jaylie 

 

Jaylie - 10 months 3 weeks - Starting IS treatment

We went into Swedish yesterday (Thursday) to have Jaylie's MRI done.
We (along with the Dr's) were hoping the Dr's would be able to use a
light sedative to keep Jaylie sedated while the MRI was performed...
Well, Jaylie had other plans for us. They started the sedative and
started the MRI but partway through they had to stop because Jaylie
was not cooperating. Jaylie started moving around which is a no-no in
an MRI. Fortunately they were able to reschedule the MRI just an hour
or so later with heavy sedation and inbutation but, what this meant
was we had to stay another night in the hospital while they allowed
Jaylie to recover from the sedative and remove the breathing tube
inserted for the MRI.

Now, if you are counting we were in the hospital Monday, Tuesday,
Wednesday, Thursday and Friday of this week. I got no more than 3
hours of sleep at a time before I would have to get up and attend to
something, welcome to parenthood Nathan...

Rewind a couple of days from today to Wednesday, to add more favor to
our already boring lives, the neurologist came back into the room on
Wednesday and advised the ACTH drug was not going to be covered by
insurance and the the cost per vial would be $30,000 and that Jaylie
would need 4 vials total amounting to +$100,000 out of pocket. At that
moment in time I can say I started to feel a level of panic. We were
advised this treatment was the best possible treatment for our
daughter but now the desperately needed treatment seamed completely
out of reach, there was no way we could pay $100,000 for medication. I
asked the Dr to check again and see what could be done. She agreed and
went off and checked again. The neurologist came back and said the
insurance company would cover part of the cost but ultimately it would
end up costing us $3,000 per vial for a total of $12,000 out of
pocket, she then went on to advise there were other treatments we
could try that would be more cost effective if we had too. The
neurologist advised she would continue to look into the costs and get
back to me, in the mean time I went down to the in house pharmacy to
pick up the medications we needed right away to take Jaylie home.

While I was at the pharmacy picking up the medications and going
through the routine of having the pharmacists explain how to take the
medications properly the pharmacists explained he had this other
prescription he was working on filling, the order for the ACTH. The
pharmacist was excitedly concerned because as he explained it was
$30,000 a vial and he had to get like four levels of upper management
approval to even order the medication. The pharmacists advised even if
he were able to get the approval he would not be able to get the
medication until Monday. Jaylie and I left the hospital not knowing as
to whether we were going to be able to start the recommended treatment
for Infantile Spasms or not...

Fast-forward to now, in another display of Gods grace and favor, we
find out after all the right people talked to each other our insurance
would pay for the ACTH needed and that the vials would be sent to us
over night. We received the vials next day as promised. Is God awesome
or what!

With all that said and done, all the meds have been received and the
tests completed. We are on track to start the ACTH medication Saturday
morning. We have throughly sanitized the house thanks with my moms
help, thanks mom! We will start the ACTH medication at 5am Saturday
morning.

There are some serious side effects of ACTH, the most prevalent being
a compromised immune system.

Please keep us in your prayers!

We need safe passage through this time of Jaylie's immune system being
compromised and for the ACTH medication to permanently stop the
infantile spasms with little or preferably no negative impact to
Jaylie.

As always, thank you all for your love, prayer and support!

YOU are priceless!

Nathan, Kristina and baby Jaylie

Jaylie - 10 months 2 weeks -- ER Visit -- Day 3 -- Infantile Spasms Diagnosis

So we have completed the 24hr EEG test of which has confirmed Jaylie
does have Infantile Spasms. What this means is we need to start
treatment for Infantile Spasms (seizures) right away. The treatment we
are going to start is a drug called ACTH. ACTH is a steroid used to
control the seizure activity. One of the major draw backs for ACTH is
it severely cripples the immune system. While Jaylie is on ACTH we can
have absolutely no contact with sickness, viruses, ect which means we
will have to scrub down the house, all her toys and live in seclusion
for a couple of weeks while the medication is administered.

Before we can start the ACTH treatment Jaylie has to have an MRI done
and a tuberculosis test done. We've started the TB (tuberculosis) test
today. The TB test takes 48 hrs to complete, so on Friday we meet with
Jaylie's pediatrician whom will read the TB test. If the TB test goes
well, we will start the ACTH injections on Friday.

ACTH is not a cure for Infantile Spasms but a treatment to stop the
devastating seizures. ACTH just recently (within the last two years)
was FDA approved for Infantile Spasms treatment. ACTH does not work
for everyone. ACTH typically takes 1-4 weeks to stop the spasms
(seizures). If the ACTH is not effective in stopping the spasms we
will need to try other treatment options. We are hopeful and praying
the ACTH will stop these destructive seizures.

Please pray with us that the treatment of the Infantile Spasms Jaylie
is having will be thorough, expedient and effective, bring about a
complete stop to these seizures and a 110% developmental recovery. If
these spasms continue they are likely to cause serious cognitive
development issues (mental retardation).

You can read more about IS (Infantile Spasms) here:
Infantile Spasms

West Syndrome (aka Infantile Spasms)

Here is a National Public article on Infantile Spasms CLICK HERE (Thanks Sis!)



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

Nathan, Kristina and Jaylie

Jaylie - 10 months 2 weeks -- ER Visit -- Day 2

I was able to stay with Jaylie last night. From about 12am until 4:30am Jaylie slept soundly. At about 4:30am Jaylie woke up with a grunt which is usually a sign of an event. I sleep right next to the bed Jaylie is sleeping in. By the time I got up and over to Jaylie she was fine, wide awake, smiling and playing. The nurse came in and I advised the nurse I think Jaylie just had an event but was not sure. The nurse advised if an event were to happen again to push the nurse call button right away and advise them of what is going on. The nurse did some routine stuff with Jaylie and then Jaylie and I laid back down to try and get some sleep. At about 5:30AM Jaylie had another event, this one was pronounced and was continued by a couple other events. I pushed the nurse call button and called the nurse in. Jaylie then did one last event the nurse was able to witness. The nurse then called the Dr in to take a quick look at Jaylie. The Dr asked the nurse and I what happened exactly and both the nurse and I were able to describe the event to the Dr. The Dr advised Jaylie looked fine at the moment and that the EEG scheduled later on in the day would hopefully give us more information.

So at about 10am this morning, the EEG guy came in and performed a 1 1/2 hr EEG during which he watched and recorded Jaylie’s brain activity. Jaylie pretty much slept through the EEG because the whole ordeal of putting the like MILLION little connectors on Jaylie’s head was a seriously traumatic event for Jaylie. Jaylie was wiped out by the time the EEG guy was done attaching all the wires. Due to Jaylie being wipeout during the EEG test, they did not catch Jaylie during an event but were able to gather enough data for the neurologist to order a second 24 hr EEG. After the EEG was complete, the results were sent off to the neurologist. The neurologist advised after looking at Jaylie's EEG results, she believed Jaylie is suffering from Infantile Spasms ( a form of seizure ). The neurologist ordered a second 24 hr EEG of which we are currently participating in. The neurologist hopes to catch an event which monitoring Jaylie during the 24 hour EEG.

The neurologist advised if it is infantile spasms we would need to start medication right away. This medication should stop the spasms (aka seizures) completely for a period of time but based upon Jaylie's medical history the neurologist advised Jaylie may have to deal with seizures later on in life.

Right now we are handing out up at Swedish doing a 24hr EEG.

The research out on Infantile Spasms syndrome is very disheartening. You can read about it here: Infantile Spasms

Thank you for all you're prayer and support, we really appreciate it!

Nathan, Kristina and Jaylie!

Here are some pictures from today: September Pictures

Jaylie - 10 months 2weeks -- ER Visit -- UPDATE: 11:57 PM

Jaylie had something similar to a seizure @ around 545PM today where she stopped breathing for a few seconds and started to turn a blue. Kristina and I immediately went into crisis mode. I told Kristina to call 911 because Jaylie wasn't breathing while I worked with Jaylie to get her breathing again. The only thing I could remember from our infant CPR class was to check to see if Jaylie was breathing and if she was to lay her on her stomach slightly declined and pat on her back, of which I did, periodically checking to see if she was breathing or not. Jaylie was slightly breathing every second or two, so I continued to keep her at a decline and pat her back until she coughed a bit and started breathing again. By this time Kristina had gotten a hold of 911 and had them dispatch a medic to our house. Before the medic could arrive Kristina was able to flag down our neighbor whom is a certified NR whom rushed in and took over while we were waiting for the medics to arrive. Once the medics arrived Jaylie was breathing normally and her color was back to normal but was acting a bit lethargic. The medics advised Jaylie needed to be take to the hospital right away and asked which hospital we wanted her taken to, either Valley Medical center (closest to our house) or Swedish Medical center ( the hospital that has treated Jaylie all along). We decided Swedish would be the best choice in this circumstance due to Swedish having all of her medical history. The medics were local firefighter medics and could not transport us to Swedish due to the distance and advised they would have to call a private transportation company to transport us if so choose to. They advise we would have to wait for the transportation company to arrive if we so chose to. Since the medics advised Jaylie was stable enough to be transported without any assistance, I advised them we (Kristina and I) would not wait for the private transportation company to arrive and would transport Jaylie to Swedish right now. Kristina and I immediately jumped in the car and drove up to Swedish. Upon arrival, Swedish took us in right away and started to take tests, vital signs and rule out possible causes for the seizure.

As it sits right now, the Dr's have advised early child seizures are common and are only medically treated if they last longer than 5 minutes. The Dr's advised seizures less than 15 mins usually do not cause damage to children at this age.

Right now we are sitting at the hospital waiting for the final conclusion, but have been advised at this point it looks like they are going to send us back home because Jaylie is 'ok' and have scheduled follow-up tests with the neurologist this week to do additional EKG scans to look at Jaylie brain activity.

UPDATE: 9:38PM -- Looks like we are going to be admitted now. Jaylie exhibited the seizure activity while the Dr was present and so they are going to admit us over night at least.

UPDATE: 11:57 PM -- So we have been admitted just for observation. Jaylie will be seen by a cardiologist, neurologist, lung Dr and gastro intestinal Dr tomorrow. The Dr's have said they are not sure these episodes are technically seizures and could be what they call ALTE's (Appearance of a Life Threatening Event), or due to complications with the reflux Jaylie has been having. So what does this all mean, what is means is that there are no major issues they see with Jaylie at this very moment -- there are events that have happened which warrant hospitalization for monitoring and testing, but nothing conclusive pointing at a major condition nor illness, which is a good thing.

Please keep up in your prayers.

Nathan, Kristina & Jaylie