Early Christmas Present

As you can see from the previous post, Grace went to daycare. We got a call last Thursday the 22nd and were told that Grace was one of 50 people approved for funding through Polk County to help out with Day Care for Exceptional Children's cost! This was a huge early Christmas present! When I say huge I mean really really really big and overwhelming. We were told that we would not get funding until 2008 if we were lucky do to some squandering of funds and political bureaucracy, imagine that. Grace will go back for two days this coming week and we will do that for a couple weeks and then see where we will go from there.

Hanging out with Friends

Well, we are all feeling better. Grace made it through her first Christmas. It was actually pretty quiet on Christmas day... we went to the local Chinese buffet for Christmas dinner.... it was packed! Grace fell asleep while we were there so obviously it wasn't too exciting -- but it was nice just to be the three of us. (four counting Hoover--- but he of course didn't go to the restaurant with us).

Grace also made it through her first day of Daycare for Exceptional Children. I was perhaps more overwelmed then she at the prospect of this, but her teachers loved her... and she was kept very busy. We are hoping this will help her sleep tonight, she has been waking up at 4 ready to go.... ugh!

On her report card it says she spent 1/2 hour "hanging out with friends" -- how cool is that she no longer has just us.... she has friends!

Kevin

Grace is still in the hospital, they tried some formula last night and she began throwing up again around 4 am. I got sick last night as I was gathering things to take back to the hospital -- and continue to struggle.

Kevin is holding down the fort for Grace and myself. And he is doing really well at it. Please keep him in your prayers... for strength, patience -- and health!

PS -- If anyone wants to go to Blank and give him an hour off -- I'm sure he'd appreciate it.

the ER

Grace was in the ER again yesterday morning.... she began throwing up late Saturday afternoon and was keeping nothing down. They admitted her to the hospital yesterday afternoon to make sure they could get some fluids in her and so they could give her medications by IV until we figure out what is going on. This is somewhat discouraging.... two ER visits in 8 days... but I'd much prefer she be there, because there is nothing scarier than watching her turn purple trying to vomit..... what a cheerful message for so early in the morning! Anyhow Kevin is with her now and I am rounding up some things to be able to get back to them. Think good thoughts!

Grateful for the little things

It's been such a mixed bag the last few days....

Grace is producing steroids as she should... she is free and so are we,
but --- the thyroid came back abnormal, this is responsible for growth and will require another blood test on Thursday.

A trip to the ER for a "normal" baby problem leads to further tests, there is the possibility that Grace could have "reflux of the kidneys"...

we are stymied by having to make a decision about daycare... it was scary the first time to make a decision, but now I am honestly petrified about where we should put her - how we will pay for "specialized" care - and if anyone but my dad is "good" enough to take care of my baby.

But... we can take her to see Santa --- and she is able to put weight on her feet longer, and Kevin called me this morning all excited because she was giving him little half smiles and making great noises. I wanted to come home. That's enough of a good thing for today---- we can keep going tomorrow.

Out and about

Today we went shopping as a family, it's been a really long time since we have does this. Naturally Grace slept through the entire experience. We were really looking forward to her being awake and taking everything in. But we are all really tired from last night.

ER Sleep Deprivation

We visited Blank ER tonight/this morning. Grace has been vomiting her formula, baby food and medicine. This was sporadic but starting to get more frequent. Tonight she threw up a large amount of formula and all of her meds. We re-dosed one med and within minutes is was back up and she was gagging and grasping for air. We called Dr. Slovan the GI on-call and after discussing the issue he felt that the G-tube may have moved, etc so he wanted us to go in.

They took X-rays but everything looked fine. They ran a but of blood tests, levels on all of her meds and several others. Turned out she has a urinary tract infection. This doesn't have anything really to do with her immune system it is just one of those things and apparently vomiting is something that comes along with it. They gave Grace a shot and a script for an antibiotic. We will see how she does.

Grace had several seizures, two while in the ER, they were harder than normal but she was never able to keep her evening doses of meds down. It will be interested seeing how her seizures react if we can get the vomiting under control and she can keep her meds down again.

Hello World...

We got the result back from the blood tests Grace had on Wednesday. Her body is producing the steroids it should be and her immune system is back to normal! So we can immediately rejoin society and see the world!

We were not expecting the results this quickly but we are not complaining...Grace has been vomiting and the GI doctors wanted to make sure everything was OK with her adrenal levels so they ask Dr. Cook to make the lab run the tests today.

Dr. Cook is our Endocrinologist and she has said that we shouldn't go all crazy as Grace has not been exposed to much so even though her immune system is back she has no tolerance against any sickness, etc.

Steroid Test

Today Grace went in for a test to determine if her body is producing enough steroids so that her immune system is back to normal. They had to draw blood from her every 15 minutes for an hour. The results will take a week.

Sleep Spindles & Organization

We had our followup appointment on Nov 20 with Dr. Doescher at the Minnesota Epilepsy Group in St. Paul, we had an EEG and then met with the doctor. We got some good news!

They were able to detect sleep spindles in Grace's EEG while she slept, this was something that was not present before and would be seen in a normal EEG. They also were able to see a little more organization in her brainwaves during awake time. So they believe that the new medicine, Febetol is starting to work! We increased it on Monday and will most likely increase it again on Friday, it will all depend on seizure control, we are still have a couple a day.

We will go back to St. Paul on Jan 8 for our next followup, we hope that there will even be more good news to follow!

Custodial Care

We got tuned down about a two weeks ago for nursing care for Grace. It's really annoying when multiple doctors say with confidence, she gets a G-tube and you will get nursing hours the next day. We were denied because Grace's care is considered custodial, but then again any infant care really is custodial.

Fortunately Dale is in for the long haul, which we may need.

Hopefully they new state legislature will get to work right away and spent part of the 300 million surplus on programs we need and not giving tax breaks! If they could just clean up the waiting list for the waiver program (Medicare) we would be able to get funding for some additional services that will be crucial as Grace gets older. If you have some free time please feel free to write your state senator or representative (http://www.legis.state.ia.us/FindLeg/). Currently we are on a 12 to 18 month waiting list for the ill and handicap waiver and at least a 24 month for the brain injury waiver. We ultimately want to get on the brain injury waiver as this will provide some specialized services for Grace's condition.

Mall, Menards, Target, Fareway -- Oh the Places We'll Go!

Grace is crying in her crib behind me, still wide awake and 10:25 pm. The medicine she is on really makes her wired! I'll have to rock her soon... this parenting for sleep thing is extremely complicated and we never know if we are doing the right thing.

Grace had two clusters of seizures today both around 4 minutes... we had been in the 8 to 10 minute range so this has been a relief. We leave for St. Paul Sunday afternoon, her appt. with the epileptologist is at 2 and there is an EEG scheduled for noon.

She has yet to spike a fever or throw up a lot so I am hopeful that we will really be able to go off of the steroids. I heard Kevin talking to her this morning about all the places he wants to take her once she is able to join the world. I have been thinking about that a lot as well. (Heather and Drue we are coming to see you!)

Grace is continuing to become stronger, more active, seems to be figuring some things out. this sleep thing right now is HUGE though. We have stopped bottle feeding as it upsets her way too much. My motherly instinct is to feed --- and while I would love to have that time holding her and having her drink out of a bottle, it's not pleasant for her or for me.

I never knew that parenting could make you feel so helpless. But I think that Kevin and I are being very strong....

Joy

Daycare for Exceptional Children --- Here's Gracie!

We saw both Dr. Kabbani today and Dr. Cook. Both were amazing.

Dr. Cook wants us to take Grace off the steroids as of today -- then in three weeks we'll go in for a test to make sure that her body is producing the steroids that it should. If all goes well Grace (and us) will be able to join the world in three weeks. I have to be honest -- I am cautiously optimistic about this. I don't want to be disappointed -- I don't know that I could take that.

Dr. Kabbani let us know that Grace's EEG continues to look the same - no worse but no better. This is amazing to us because she is doing such wonderful things. Playing, crying, standing on her own two feet (with assistance) - she is very close to sitting all by herself, she babbles, she plays and reaches for things. We were hoping this meant good things (like an improving EEG). Kevin called and I followed up with the Minnesota Epilepsy Group today-- we are increasing the med dosage again.

Today my heart is sad for her, and for her future, but I hear her now playing with the bird on the mirror -- talking-- and when I turn around her little self is in snowman pajamas with feet -- and I feel small rays of hope.

Joy

Amazing Grace

I forgot to mention yesterday that Kevin and I were able to get out last night and go see Chris Tomlin.... because Suzanne decided that she would share her mom with us. Thank you Suz.

Home Sweet Home

We have been home for almost a week now. Grace's medications have been changed slightly as the seizures continue, she still has not had more than 2 clusters of seizures a day, a couple of days none and some days one. We are thinking that ultimately we will end up having to give the Ketogenic diet a try. We are set to return to St. Paul for the day on November 20 to meet with Grace's epileptologist and she will have an EEG while we are there.

The new medication she is on keeps her wide awake... we have a had a few really late nights and both of us are tired. We are adapting to the G-tube, but Grace seems to have embraced it fully! Our OT says that Grace is quite smart and has learned that it is easier to be fed through the tube then to work the whole sucking thing out when presented with the bottle. This bugs me... I'm not sure what to do about it yet but I'm looking at some options and making some calls!

Kevin is working this weekend and I am trying to get things in order here. We have a busy couple of weeks ahead of us which is quite daunting to think about so we are trying to be as organized as possible. We have quite a few doctor's appointments for Grace here, I have several work deadlines, we'll be headed to Kevin's parents, and I think that's it, but, it is enough!

There is a possibility that we will have home health nursing set up towards the end of next week, which means that Dad would no longer be so "scheduled" in his well earned retirement. We have recieved many gifts and blessings but the gift of his time, my mom's willingness to share him, and his willingness to deal with things outside of his comfort level is amazing and beyond belief. I don't really know how we'll explain that to Grace someday.....

I normally leave this blog to Kevin -- but several people have asked so I thought I'd include my thoughts.

Joy

Day 10 in St. Paul

Grace is doing incredibly well! She is more awake and alert, and has been sitting up being supported or in her therapy chair off and on for about an hour total so far today. Grace is off of the Iv antibiotic and going to an oral version that she will be on the next 8 to 10 days.

We are going to increase her Febeltol today and add a vitamin(?) that will protect her liver that can be harmed by being on the Depakote.

Labs are all looking good.

Three days without a seizure!

Should go home on Sunday!

Day 9.75 in St. Paul

Today went well for Grace. No seizures all today, so the Febetol must be doing something. Granted this could also be the honeymoon affect that we have experienced on many other meds.

Grace had no Tylenol today and she does not appear to be in pain, she was awake a great deal more and sitting up well and holding her head up really well.

We are completely off of Topamax now the really bitter tasting medicine that Grace was taking.

Dr. Doescher really wants to "clean" Grace up with the number of meds she is currently on, I would suspect by the time we return (if we need to return) to start the ketogenic diet that she will be on only two or three anticonvulsants and maybe Prilosec, we may even be able to eliminate that one as well. Who knows time will only tell?

Most likely looking at being discharged by Sunday.

Day 9 in St. Paul

Grace slept pretty well last night this is the first night since mid August that she has not been fed overnight. She woke up around 4am and took a couple ounces.

Her blood cultures are still not quite right, they want to make sure any infection is knocked out before discharging her. Dr. Strafford who did the surgery and is handling the followup believes that we should be able to be able to go home Saturday, Sunday, or Monday.

Day 8 in St. Paul

Grace's fever broke last night, our Epileptologist spoke with our Endocrinologist in Des Moines this morning and they decided to keep her at the triple dose of Hydro-cortisone for the day and possibly the next day, she will have no problem resuming the tapper of the Hydro-cortisone after we get over this little hurdle.

She has taken 2 - 4 oz bottles already today, she had a 1/3 of an ounce left in the second bottle so they put it through her tube. The idea now is to feed everything by bottle and what she does not take we tube. So if this works we will not need to run the pump at night anymore. We may need to run the pump during the day at times depending on how much she won't take by bottle; we need to shoot for an over the day amount.

They did X-rays this morning to make sure everything was OK and to help rule out any internal issues as to why she had the fever. Her white count went up last night after she got the Hydro cortisone. They are going to keep her on the Iv antibiotic and give her Tylenol and ibuprofen in rotation to keep her temp normal and to help prevent any further infection.

Day 7.75 in St. Paul

Grace had a fever of 102.1, her regular Hydro-cortisone (steroid) dosage seemed to help break the temp, she's down now to 97.1. She got a sponge bath and they are going to triple her Hydro-cortisone tonight to help fight off any infection from the steroid. She is also going to go on antibiotics by Iv versus the oral ones she has been getting since the surgery now that her temp has been running high.

Day 7 in St. Paul

Grace did well overnight, she hasn't been awake all that much today on and off for 20 minutes max at a time. She took a half a ounce of pedialyte which was her first thing in her stomach in over 24 hours minus her medicine. She just finished taking a couple ounces of formula.

They gave her morphine three times to help with the pain and she is getting Tylenol every four hours by suppository.

She is on the Febetol now and her dosage is being increased each day, this drug is an anticonvulsant; we are also tapering her off of the Topamax another anticonvulsant she will be off of this medicine before we leave. Grace is also off of Carafate as of today.

The GI doctor that performed the surgery stopped by and loosened the plug on Grace's stomach a bit to help with some discomfort.

Photos of Grace & Hoover

Our photos are online. Click Here to see them, when the page load click on Kevin..., grace is the password.

Day 6 in St. Paul

The surgery to put the G-tube in went good. No complications.

She has lots of equipment hooked up to her, tubes going everywhere. She has a potassium drip, we are hoping that she will smile again, she really smiled alot after being on a drip at Blank back in August.

Her esophagitus (acid reflux) is looking much better so we are going to take her off of Carafate that was used to coat her esophagus.

We are also going to start tapering Topamax and eliminate that medication; we don't think Grace will mind. It has a real bitter taste and is the hardest to get her to take.

Day 5 in St. Paul

This morning Dr. Frost wanted to start Grace on Febetol (spelling?) as she is just having too many clusters of seizures to not try and do something for them.

We just got word that we will have Grace's surgery is scheduled for 10:15am Tuesday. She will get her G-tube put in. They do not want to start the keto diet yet they first want to make sure there is nothing wrong with her tube and it gets healed up before heavy use. We will be here until at least Friday will probably head home on Saturday.

Day 4.5 in St. Paul

No Day 4 entry, Sunday was pretty uneventful. We are back at the hospital early this morning as we didn't want to miss any of the doctors doing their rounds. Grace got a roommate in the middle of the night. Shared rooms are the only real downfall of being here at Children's. It's too bad they don't have more space or less clients so this would not ever be an issue. They are pretty land locked plus the building would not be an easy one to add onto do to it's design.

Day 3 in St. Paul

Yesterday we seemed to just wait around. But mid-afternoon the doctor that was doing rounds came to visit us. He is an epileptologist with the same group but with an adult specialty. He was very nice and easy to work with; hopefully he will be with the Minnesota group for a long while so we can work with him down the road.

We made the decision that we will go with the Ketogenic Diet, we found out that we have an appointment on Monday with the keto dietician. There was some confusion as to if we can start the keto diet right away after Grace gets her G-tube, looks like the timing is not a big issue we can start the keto diet with the NG-tube. So we will need to discuss the scheduling with the GI doctor also on Monday. He has trying to contact our GI in Des Moines on Friday but they were not able to connect. It will probably be Tuesday (at the earliest) before they schedule her in.

The G-tube procedure puts the tube down her throat and pushes out through her stomach wall and through the skin, then there is some sort of plug that we will be able to open up to feed her. The big reason for needing this tube for the diet is that since her feedings are specially calculated she needs to eat everything that we will give her. So if she won't take it by bottle we give it to her by tube. Even later on when she starts eating real food she will need to eat everything given to remain in the state of ketosis.

Day 2 in St. Paul

We read up on the Ketogenic Diet and also got our hands on a book put out from John Hopkins that is said to be the reference book when it come to Ketogenic Diet.

Met with a GI doctor today, he would like to see Grace get a G-tube put in independently if we go on the Ketogenic Diet or not. He said the max his practice has is 6 weeks on an NG tube. Having a NG tube can also reduce her appetite since there is a tube constantly running through her esophagus.

We were suppose to meet with the keto dietician but she did not show up even after several pages. We originally though there was a keto program in Iowa City but there is not and St. Paul is the closest and having the doctors and dietician essentially in the same hospital will make it easier to get answers.

Looks like we may have to wait until Monday to get any more answers.

Found a Carter's Store tonight, got Grace some warm clothes and a wind up musical giraffe. Plays the same song my old wind up Koala played.

Day 1 in St. Paul

We traveled up to Fairbault, MN on Wednesday night. We were constrained for time with Grace's medication/feeding schedule (mostly overnight feedings though her feeding tube) so we decided to spilt the trip up and make our Thursday morning drive short. We arrived at Children's Hospital in St. Paul and saw Dr. Frost, one of the Epileptologists from the Minnesota Epilepsy Group. There are some additional drug therapies that we can try, I can't remember the exact names right now and probably couldn't spell them if I tried.

Wednesday was the last day of Keppra; they checked her dosages of Keppra while she was on it and we may have been in the therapeutic range it is pushed significantly higher and does have some results, we may go back to Keppra in the future if other treatments don't work.

There is one drug that has not been approved by the FDA as of yet, possibly might be approved next year. It is the preferred treatment in Europe over ACTH which was the steroid we tried originally. The drug I believe is called Vigabitrin, and is not a steroid; currently it is available in Canada by prescription or over the counter in Mexico and very very pricey.

Another option that may be an option is the Ketogenic Diet. The diet is a very very very strict diet that consists of about 90% fat. It would be easier to try it now versus later as she gets older as we would be formula based to start plus since she hasn't started food she essentially would not know any different. This treatment has been around for at least 80 years, instead of providing glucose for energy the body gains it's energy by burning fat. The diet is similar to Atkins but much more strict, virtually no carbs and the slightest deviation from the diet could could completely negate everything in the past. Needless to say Chocolate Chip Cookies would not be in Grace's future.

If we decided to try the Ketogenic Diet, Grace would have to have a G-tube put in; she currently has a NG-tube through her nose this would be a tube surgically put into her stomach and I believe a port would be in her belly. We would have to commit to try this for 3 months and if it worked we would be on it for apx the next 2 to 5 years. The benefits of this are that the diet can actually change the way the brain functions and could make Grace seizure free in the future or at least reduced even when she goes off of it. She would also be able to continue on drug therapies and once we reach a point in which seizures are stopping we would then reduce levels of the medicines to determine in the drugs or the diet are working or if it's a combination of the two. This would be a "natural" treatment option which is intriguing. We would be in close consultation with a Ketogenic Dietician here at Children's and working with an Epileptologist. We are going to meet with the dietician again today and most likely a GI specialist; if we go forward we would have to be in the hospital for a minimum of 5 days after the tube in put in. We will post more when we know more.

Sitting Up

This is a special chair that is helping with Grace's Head Control and body strength. She could only do about 3 minutes at a time when she started now we are up to 10!

Back to St. Paul

We went to see our Neurologist a week and a half ago and he told us there was nothing more that he could do for Grace and that she need to see an Epileptologist. We went into the appointment and the last wanting him to contact Dr. Ritter at Children's Hospital in St. Paul who we saw back in June but that never materialized. So we called Ritter and they wanted to see us, first they need to be updated on what had been tried, they figured we would be able to get in around November as the hospital was in the middle of a major computer upgrade but last Friday at around 4pm they called and they want to see Grace Thursday morning to be admitted. So we are heading up, we don't know really what will transpire just that this is the next step.

We are down to .2ml of Hydro-cortisone the steroid we switched to after the ACTH really messed Grace up, we are giving this to her twice a day and will continue until next Friday when we will drop to .1ml twice a day for two weeks after that the current plan is she will be off of it and then 4 weeks later Grace's immune system should be back up! They we can rejoin the wonderful world of daycare!

We are taking Grace off of Keppra one of the anticonvulsant drugs she is on, there was no evidence that it was working for her we will give her the last dose on Thursday morning.

We will try and put updates out here while we are in St. Paul.

Sleeping with a Blue Monkey Thing

Running on Empty is not just a Jackson Browne song

To All:

Grace will be eight months old on Thursday. It's officially hard to imagine life without her. We can't remember what we used to do, although I'm sure Hoover remembers that he used to get more attention! I wanted to let you all know how Grace is doing and ask that you continue to keep our family in your prayers.

Kevin and I feel we have survived the crash course in epilepsy and are now beginning to figure out what it is we need to do next. Grace is currently on four anti-convulsant medications (as well as a cadre of other drugs) and we are considering taking her back to the epilepsy center in St. Paul we were sent to upon her initial diagnosis in June. We meet with her neurologist here on Thursday and hope that he will be agreeable to helping us with this step. We worry about burning our bridges with him, but he's seen two other infants with Grace's diagnosis, the group in St. Paul has seen far more. And if we actually do burn our bridges I guess he wasn't the neurologist for us in the first place.

Since her website was last updated Grace has gained several other doctors and a feeding tube. All of this results in an incredibly busy schedule and though I for one have never been amazing at being organized... I have had to kick it in to high gear. We also have a home health nurse, a physical therapist, two occupational therapists, and a teacher to schedule into our days. All of them are greatly impressed with Grace's progress as of late. We are still really behind, but we are able to see that she is learning and growing physically stronger everyday. Because of the medication her immune system is still comprimised and my father is now living with us three days a week to take care of Grace. Everyone at work tends to ask how my dad is hanging in there, before they ask about Grace. They think its amazing he is willing to help, and we think it is too, we couldn't do this without him.

Work has been busy, but my co-workers have been very supportive of my need to duck in and out of the office because of various doctor's appointments and understand that when the neurologist calls and asks to speak with me I need to leave what I am doing to go and talk with him. Because of Grace's immune system we mostly hang out at home, and in the back yard if its nice. Kevin and I got the opportunity to go to Target together last weekend (thank you Mom!) and that was just wonderful. We had so much fun!

Kevin's co-workers have been amazing as well. He isn't looking forward to the holiday season however because it will be such a busy time. There are of course many things to do, and when only one of us is here Grace takes front and center stage... the rest just has to wait.

I have done a lousy job of keeping you all informed of our lives, and hope to do a better job reaching out to you to share our story. I won't pretend it isn't hard, or we don't have bad days.... but we also have wonderful moments, a beautiful daughter, lots to look forward to, stories to read, and the sound of baby sleeping noises in our baby monitor at night - ultimately we have been blessed.

Love - Joy

Left Side, Right Side

Grace started using her right arm and reaching out towards a hanging object while in her swing today. She is batting at objects with both arms! She was just starting to do this before all of this started. Part of the loss of this skill was most likely do to a set back from the seizures and the other from the medication she is on. Now if she would only smile.

Decrease Medication

Today we drop Grace's ACTH down to .25ml the original dosage we started her at. We are also going to decrease the clonzapam, as her head and body control are getting significantly worse, the clonzapam is a muscle relaxer so we are hoping that this help.

Back to the Pediatrician

We went back to the pediatrician's office today, this time to meet with our regular pediatrician. We seemed to get things worked out and more of a straight answer as to what was going on with the diagnosis of Grace having thrush and then not having thrush. It was a relief to speak to Dr. Fornoff; we tried to assure him that we were not trying to be difficult it's just really tough when two doctors are angry at each other and we are getting thrown around between them. We just want the best care for her and we can't seem to do that when ego's get in the way. It's not like we enjoy spending half of our awake time in various doctor offices or hospitals.

OT Visit

Today we had Grace's Occupational Therapy. We are trying to develop the use of her right side, she greatly prefers her left side. We are working on things like rolling over and gripping objects. Grace was starting to grasp objects before all of this started but she has lost the ability. Right now at almost six months she she around the development of a two and a half month old. We have been working on things for the past few weeks. We started to see some significant changes in the last couple days she is starting to tract objects much better and grabbing a hold of light objects. She even rolled over today to her back, granted she was a little annoyed to be on her front so that probably helped.

We tried to feed Grace some rice cereal with a spoon, she did really well for our first attempt. We need to get her eating by a spoon because if the drug Keppra she is on does not work we will be switching to Topamax which comes in little sprinkles that we will need to feed her on top of applesauce or rice cereal.

Eating with a Spoon

Night Out

Nancy came to watch Grace tonight for a couple hours so Joy and I could get away. Nancy took care of grace at daycare before all of this started.

Worth Every Penny

Not to mention nickles, dimes, and quarters.

Doctors

Grace may or may not have thrush. The substitute pediatrician prescribed a medication on Monday to treat it, today we have a new prescription to prevent it and he doesn't know where the idea ever came from that she has thrush. We basically are not listening to him anymore and going to go by what our Neurologist says as he has more experience with ACTH and its side effects and is very concerned with any side effects.

Grandmas & Food

Grandma Deb arrived today. Haven't mentioned anything about the Grandmas...lately they have been taking turns taking care of Grace from Wednesday through Friday. This has been a huge help and it has saved us from taking time off of work to take care of Grace. Plus it is really good for the both of us be at work just to maintain our sanity.

People are bringing us meals now this another huge help. Our church is organizing meals three nights a week. We were eating lots of take out and junk food and it was getting the best of us.

The Tapering Plan

Went to see Dr. Kabbani today we will be decreasing Grace's ACTH, it will take 4 weeks to taper her off of it. If we go to fast her body could go into shock. After that it will take Grace 2 to 4 weeks for her immune system to come back. Kabbani is concerned with the thrush and how it is progressing and wants us to see out pediatrician once again and see if we can get some medication to treat the large amount of eczema on her forehead. Kabbani can not prescribe this as he is just our neurologist (I think it is a conspiracy) but her would call and professionally advise the substitute pediatrician that something else needs to be done and offer recommendations. We like our neurologist!

Grace's blood pressure was very high we are going to double her blood pressure medication.

We are also starting Grace on Keppra another seizure medication it will take three days and half dosages before we can giver her a full dosage.

Old Mc Grace had a Farm

Down with ACTH

I took Grace back to the pediatrician and saw the the same doctor we saw last week, our primary is on vacation for the week. He felt that we were making a mountain out a mole hill and that Grace's case of thrush was nothing to be concerned about and we should continue treating her with ACTH. We did start her on a medication to treat the thrush.

All of this was contrary to what Dr. Kabbani has been telling us and we trust our neurologist by far more that the substitute pediatrician. Joy called the pediatricians office to speak with the substitute pediatrician to ask additional questions and address her concerns of having thrush with a weakened immune system. Everything we have been reading indicates that this is really bad. He called us back and was rather short and argumentative. Perhaps it's time we think about switching pediatricians.

We contacted Dr. Kabbani's nurse and advised her that Grace's seizures have not decreased in the past week, that she has thrush, and the issues we are having with the pediatrician's office. We wanted to know if we could decrease Grace's ACTH the next day. Granted we had an appointment the next day but we wanted to start tapering now versus later if at all possible, even if it is only one day. We are ready to have a normal baby back. Dr. Kabbani's nurse called us back and we are to back off 25% of the ACTH and we will put together a full plan the next day.

lalalalalala

One More Week

We met with Dr. Kabbani today, Grace's seizures decreased to two each day for the past week except for one day she had three. We don't know whether it was the ACTH or the klonapin that caused the reduction in seizures or a combination of the two. We thought this was really good news but apparently this is the max dosage we can really give Grace and since there was a decrease in seizures it would make sense to continue for one more week to see what the results are. Grace should be seeing zero seizures a week with ACTH, maybe one.

Kabbani thinks Grace may have a little Thrush starting, she already has some diaper rash and a yeast infection. If she has thrush we will need to start reducing the ACTH as her body simply can not fight off an infection at this time. We went to see our pediatrician but he was out for the day so we saw another doctor in the group he did say she a mild case of thrush but said it was nothing to be concerned about and that continuing on the ACTH treatment was the best course of action, he should know after all he has had another patient on ACTH in the past.

Fireworks

Grace didn't like the fireworks on the 4th, they woke her up and she was mad.

Week 3

We went to see Dr. Kabbani this morning and we were ready to take Grace off of the ACTH, we saw a little reduction but not much in the seizures. however we left with the plan of increasing her to double the amount we started giving her to go for one more week. Kabbani has had a patient in the past that did not react to the ACTH until they got to this high of a dosage, so it may just be a dosage thing. We are also going to increase her klonopin (other seizure medication she is on). I think this is an attempt to treat the seizures as nothing is really happening so far, but the good thing is that klonopin is a muscle relaxer so it will counteract the steroid. I can't imagine Grace on only the steroid.

Increased Steroid Use

We went back to Dr. Kabbani after a week of being on ACTH. Unfortunately there was not a significant decrease in seizures so we will be increasing her dosage by 50% for the next week. We will know in two weeks of starting ACTH if this drug will work for Grace. We feel like it is our fault that Grace is not getting any better. Since we give her the drug and that is all we can do we feel like we are failing her. We have to increase her Prilosec to double the amount, the insurance company didn't like it at first but it is preventive so she does not develop stomach ulcers which is yet another side effect of the ACTH. Grace's blood pressure is high so we have to start her on a blood pressure medication as well.

Bad Dog

No Hoover I don't want my face licked!

Injection 2

Today we (Joy) actually gave Grace the injection of ACTH, you could hear the skin tear as the needle broke her skin. No parents should ever have to give their baby a shot. We are incredibly thankful that the home health nurse took her own time to come back to our home to assist us.

Now it is kind of a waiting game to see what happens with Grace's seizures.

Injection

This morning the Iowa Methodist Home Heath came out to deliver Grace's ACTH and all of the supplies we will need to give her the drug. ACTH has to be given by injection and we will have to give it to her. Dr. Kabani said this agency would come out for a week to give/assist with injections but we found out that they only come out once. The nurse that delivered the supplies and gave Grace her first injection apparently saw the fear in our eyes and volunteered to come back tomorrow before going to work to assist us with our first injection.

We went to our pediatrician today for Grace's 4 month checkup, one would think with all of the recent visits to doctors this would have just been taken care of already. We will not be able to give grace her 4 month immunizations until after she is completely off of the ACTH which could take up to 6 months.

Treatment

We met today with Dr. Kabani and we will be starting Grace on a drug called ACTH which is a steroid. This drug has the most promise in treating infantile spasms and can essentially wipe out the seizure she is having. There are lots of side effects of the steroid including weight gain, irritability, and a weakened immune system. We won't be able to take Grace anywhere with her weakened immune system not grocery shopping, daycare, church, no where except to doctor appointments.

We have been told that ACTH is the same drug that pilots were given in WWII to make the more awake and agitated. And we are giving this to a baby?

Grace is already on another seizure medication that they started her on while in the hospital called Clonapin will will keep her on this for awhile as she needs some drug therapy to until the the ACTH builds up in her system.

Email Update 6/13

(This is an email sent out after returning home and being in a hospital for the last 5 days.)

We are home! We got home last night around 11:45pm. It was great to sleep in our own bed. Grace seemed to like her crib too. Hoover is very happy that we are home, I don't think his tail has stopped wagging.

Email Update 6/12

(This is an email sent out while at Children's Hosptial.)

We have good news! Grace DOES NOT have the very rare and life threatening form of Epilepsy called Aicardi Syndrome. We just got back from the Eye Doctor and are waiting for Dr. Ritter the Pediatric Epilepsy specialist we came here to see, he is busy until 4pm so we are hoping that we will be able to see him as soon as he gets back. Hopefully he will have a diagnosis and treatment plan that we can begin.

It is sounding like we may be able to go home today. Grace has had two seizures today, she had one on the way back from the Eye Doctor, but it was much lighter than her normal ones. Not sure if this means the medicine she is on is working or what.

We will let you know more as we find things out.

Unplugged

Email Update 6/11

(This is an email sent out while at Children's Hosptial.)

We are in St. Paul right now at Children's Hospital. They have a pediatric epilepsy unit that we are in; the doctor we are working with is part of the Minnesota Epilepsy Group which is considered to be the best in the Nation if not the World.

What we know so far...Grace has Epilepsy and a rare form at that. The Neurologist in Des Moines we are working with believed that Grace could have an even more rare and life threatening branch, he has only seen 1 case and the doctor we are up here with has seen 20; the doctor that discovered it in the 60's is still practicing has only seen 140. The doctor in St. Paul believes Grace DOES NOT have this! We will know more tomorrow as we are waiting for a Pediatric Eye Doctor to come in, he will be checking for some formation/deformation. This formation/deformation will indicate that she has this rare and life threatening branch.

Grace is on some medication which seems to be helping but for the most part we are just here for observation. They will be determining what medication she will need to be on, we may be able to go home on Monday or may have to stay for more observation depending on her medication. Or we may be able to go back to Des Moines and stay at Blank while they regulate medications.

That's all we know right now. Joy and I are doing well, considering all of this. We have come to the realization that Joy has been training all of her life for this with her working with mentally/physically handicapped and her OT background. For me this is going to be another lesson in patience.

I think Joy and I are going to get away for a little while, I'm taking Joy to the Minneapolis Sculpture Garden (Big Spoon and Cherry, look it up on the web you will probably recognize it) and then we are going to get something to eat. We have to get out of the hospital every now and then just to feel normal.

We've got lot of pictures of Grace; I'll have to start up her blog again so we can show everyone what is going on.

Thank you for your prayers!

Mommy & Me

Cindy Lou Who

Room with a view (downtown St. Paul)

“St. Paul or Bust” or “Long Day Coming”

Thank God it’s Friday, time to kick back and relax or spend the weekend in a hospital. We left Des Moines around 2:30pm much later than anticipated; it took a long time to get all of the discharge paperwork put together. I went home to pack and let Hoover out. My Brother was going to take care of Hoover while we were gone. He is not Hoover’s biggest fan but I think Hoover grew on him over the next few days.

We headed up to St. Paul with a pit stop in Clear Lake so the whole family could eat. We arrived at Children’s United Hospital and were checked into the Pediatric Eplipsey Unit; we then answered another barrage of medical questions. Grace was hooked up to the Video EEG that she would remain on for the next three days.

We had no place to stay and were told that only one parent could stay in the room with Grace. We were not only shocked and appalled but we had no idea what to do next. We were both so tired and beaten down with all of the information we had digested in the past 48 hours that finding a hotel wasn’t even something we were able to think about. Our brains could not function outside of anything but caring for Grace, when tasked with something outside of this realm we just shutdown.

We spoke with Dr. Ritter around 10pm. Ritter had reviewed the MRI and believed that Grace did not have the rare and life threatening form of Epilepsy! He wanted to run the Video EEG for the weekend and have Grace see an Ophthalmologist to officially rule out this rare and life threatening form of Epilepsy. Ritter asked where we would be staying and told us about some apartments that the hospital rented out for families that were connected to the Hospital; we were able to get a room.

Brave

say your name
just your name
and i'm ready to jump
even ready to fall
the way it always was
is no longer good enough
you make me want to be
brave
~nichole nordeman

The Next Day (photos)

The Next Day

The morning came and we arrived at Blank at 11am, Grace was hooked up to the Video EEG. She was hooked up and for the first hour or so and we had to mark each time she has a spasm by clicking a button hooked to the EEG system. It almost felt like we were hurting her each time we had to push the button. It was like the trigger used on morphine drips for patients in extreme pain.

We were waiting for Dr. Kabani and went to get something to eat in the cafeteria. When we got back Kabani was there along with a couple residents; teaching hospitals are a great thing and it is awesome that Grace’s condition was able to be used by these Dr’s in training but it does get frustrating to answer the same questions over and over again. You start to wonder if they ever read charts! Perhaps this is part of the learning process.

The crowd of doctors and nurses were gathered around Grace’s bed watching her, there was no room for us. We sat and did the only thing we could do and ate our sandwiches which felt all so weird but it was already 2pm and we needed to eat if we were going to get through this day. They were able to determine that she was defiantly having seizures. They gave Grace a shot of Vitamin B6 this actually relieves seizures in 1% of people with seizures, it didn’t work for Grace.

Kabani managed to schedule Grace’s MRI later in the day and we would be having a spinal tap the next day. The purpose of these two tests was to determine what was causing the seizures.

They gave Grace anesthesia through her IV and after she was out wheeled her down to the MRI. We sat in the waiting room trying to grasp what was coming next.

We met with Dr. Kabani that night and about two hours of debriefing we knew that Grace had Epilepsy. The MRI had shown that Grace’s brain hadn’t formed correctly. Of concern were the corpus callosum and the thickness of the crevices in her frontal part of the brain. What we didn’t know was if what she was a rare and life threatening form of Epilepsy or just Epilepsy. We decided in those two hours to drive to St. Paul, MN the next day in order for Grace to see a Pediatric Epilepsy Specialist.

Baby's First EEG

Today marked the day of Grace's first EEG. About two weeks ago we noticed that she was having little spasms in which she would tighten her fists and crunch her arms and legs into her body…somewhat curling into the fettle position. We called Iowa Health's My Nurse and they thought it was just a startle reflex as we seemed to notice it primary after she would wake up.

After a week went by and we attempted to startle her on our own and we could not reproduce this “startle reflex” we when to our pediatrician's office, they felt that it was a case of acid reflux. This was difficult to understand as Grace has never been much of a spit-up baby. The thought was that she was spitting up but swallowing/gagging on the spit-up which was causing the spasm or gagging reflex. We started Grace on Prilosec and after a few days of seeing no result and performing our own research on the web on infantile spasms we went back to see Dr. Fornoff. Fornoff was concerned and arranged for us to have an EEG, the results came back abnormal. The results being abnormal and that we need to take Grace to Blank to be admitted for more observation were our only pieces of information. We sat at home the rest of the day worrying and fearing the worse. Late that night Dr. Kabani, Pediatric Neurologist called us to let us know what he was thinking and the immediate plans for Grace. We were to come to Blank at 11am the next day to be admitted; from there Grace would undergo a Video EEG, and MRI of her brain, and a spinal tap. Now it was time to go to sleep and await the next day, good luck.

7th Inning Stretch

Grandpa Dale and Grandma Deb got Nathan and I these cubby outfits on one of their baseball trips.

Grandkids and Great Grandkids

Great Grandma with all of us.

Aunt Heather

This is my Aunt Heather, she lives out in North Carolina but she is moving to Michigan and will be much closer very soon!

Go Cubbies!

Rocking Chair

Grandpa Dale in his retirement rocking chair with Nathan and me. This chair is going to get alot of mileage!

Pooh Hands

Cousins

mmmm Cake

Who says you can't have your cake and eat it too? I'll stick my foot in here and then see if anyone wants to eat my cake. It will be all mine!

Everyone for lunch

Nathan Sleeping

Here is Cousin Nathan, Great Grandma, and Uncle Chris

Baptism

Me and Mom and Dad. Look at my pretty dress!

Precious Little Girl

Aerial Photo

Puppy is jealous and always trying to get in my photos.

Lets go already

Time to get going, who are we waiting on?

Are we cute or what?

This is my Easter Bunny dress that Aunt Veda got me. Seriously who is cuter in this picture?

Bathtime

Fun with my Mobile

Aunt Lisa

This is my Aunt Lisa, she likes me better than Uncle Jason.

Easter Ducky

The Easter Bunny is actually a Duck!

that's MY passifer

Me and Grandma Reva, this my first visit to their home.

it's Superbaby

Road Trip

I love riding in the car, it's one of my favorite places to sleep!

Photo Opp

I was getting my picture taken and puppy wanted a piece of the action.

Eyes Wide Shut

You'd better have a good reason for waking a sleeping baby!

zzzzz nap time zzzzz

Dad and me napping under my beautiful quilt made by Grandpa Dale's and Grandma Deb's neighbor Dawn.