Family Weekend

Our weekend in pictures.  We had so much fun in TN with our family!

Josiah's first fishing trip!

Cousins at the playground, soaking up some rays...

Norah ("Rosie")

Anna

Baby Jack

Baby Jack's adorable foot!!

Our growing family!

#1.  Abby struggling to sit...

#2.  Working harder...

#3.  Sitting tall!

Neurology results

This morning we all went to visit Abby's neurologist for our appointment to discuss her ambulatory EEG results.  It was a good visit with plenty of time to talk about all the details surrounding Abby's seizures.

A quick rundown of what we discussed:

- Yes, the new 'hair pulling, rapid breathing' behavior we have seen are seizure events

- Yes, every time we pressed the button while she wore the electrodes there was a seizure event happening

- Abby's brain activity during a generalized seizure (tonic clonic) is not what is typically found (epileptic spiking);  instead her brain goes into "runs" of very rapid firing.  This difference is related to her individual brain damage related to the grade IV brain bleed.

- Abby has short periods of epileptic spiking even when there is no clinical evidence of a seizure;  she said this is nothing to worry about, it's like having an extra heart beat every now and then.  She's more concerned about the seizure activity with clinical signs.

- There is asymmetry in the brain activity between the left and right hemispheres.  Some slowing on the right side.  She said this probably means most of her seizure activity is triggered by the right, temporal/occipital lobe area.

- Yes, Keppra makes people cranky.  Abby is on a pretty hefty dose, so it is very possible her sleepless nights and hours of fussing could be related to her medication increase.  

- Yes, we can discontinue the Lamictal.  

-Yes, we will need to try a new medication.  It's called Banzel and is new on the market.  She has several patients on it right now who have gotten very positive results.

The plan is to try the Banzel and slowly titrate up the dose for the next 6 weeks.  We will keep close track of Abby's seizure activity during this time and meet again June 16.  At that time Abby will have another ambulatory EEG done for 48 hours to see if there is any change.

She also increased the VNS settings.  It is programed for rapid cycling where the VNS fires on for 7 seconds and off for O.3 minutes.  So, it goes off frequently for short spurts.  I'm still trying to understand all the other numbers involved (mA, Hz etc.)

We are hoping to see some improvement with this new medication.  Although we would prefer to have Abby on less meds, seizure control is very important.  The doctor explained that it is like trying to find the right "recipe" for Abby.  Being on three medications that compliment each other and decrease seizure activity is better than being on less with poor control.  That made sense to me.

The next 6 weeks will be another test of sorts.  Some of the side effects from Banzel are loss of appetite and trouble sleeping.

We are praying that Abby's sleep will not be interrupted and that her body will adjust quickly to this new cocktail. 

Abby details and 29 weeks

This week we turn 29!!  Gestation that is.

Hopefully only 6 more p-17 shots, one more growth ultrasound and 11 more weeks to go.  Of course we are shooting for 40 weeks, but we would be thrilled with anything past 36!

I had a doctor's appointment yesterday where we discussed my contractions and such.  She checked the "baby house" with ultrasound and found all to be as it was before.  whew!  We just never know.  For most, contractions at this point can be totally benign and expected... but we know all too well that it can also mean a silent disaster around the corner.  This makes us all the more thankful for a watchful doctor who is willing to look into our concerns.

At 29 weeks all is well!

Our house is also slowly on the mend from the most recent cold.  Abby is still very congested, but fortunately has avoided any pneumonia from developing.  Her tummy has had lots of problems, but hopefully today we will see improvement.  I am starting to feel better too.

This Friday we will be meeting with Abby's neurologist to go over her EEG results.  They called a few days ago to tell us to increase her Keppra dose.  I'm not sure if this is coming from blood levels, the way her EEG looks or her most recent Big seizure.  We shall see.  It will be helpful to know more details about what her brain is doing during seizure events, but also with the different behavioral changes we've noticed.  I'm not sure if Abby's treatment plan will change much, but we are hoping to Not have to add another medication.

Last week we took a trip to Birmingham to see the glaucoma specialist.  Her eye measured exactly the same as it did 4 months ago, around 24.  He said he could live with those numbers.

She was such a brave girl as he poked her eye numerous times to get multiple readings.  I think she knows when it is time to be brave, because in the waiting room it was a different story!! She was definitely upset and anticipating that something uncomfortable was about to happen.

We will continue with the same two drops and will see him again in 6 months.  

As part of a requested evaluation for Abby through our school system, a teacher for the visually impaired (TVI) came for an assessment last week.  It turned out to be very helpful!  Some of these evals are just more of the same question and answer sessions with no new information for us.  This guy actually gave us some suggestions on pre-braille activities and things to work on toward better communication.  So, that was encouraging.

28 weeks

Our new baby now has his eyes open and weighs over 2 lbs!  We are still thinking about names.  Now that he is getting to a safer gestation it's more fun to explore names.  There are a few we both like but haven't settled on one yet.

This is about how we are all feeling this week.  

Josiah started the sickness this week,  and Abby followed by stressing us out with her big seizure.  Now we all have this nasty cold and are feeling lousy.

Abby has been pretty out of it since Monday's excitement.  Diastat always affects her for several days... she feels like a rag doll and is not very alert.  The fever plus the other symptoms just really wipe her out.  Her tummy has been pretty upset too, so we turned down her pump rate to keep her comfortable but hydrated.

Her fever is down today which makes us happy.

Here are a few pictures of the kids on Easter Sunday.  

ER

After 6 months of ER avoidance, we made an unexpected trip there this morning.  Abby spiked a 103+ temp early this morning.

She woke up a little before 6 am.  As soon as I saw her I knew she was Sick.  Within minutes she quickly went into a status (prolonged) seizure.  After some very fast Tylenol and Diastat we loaded up and headed to the hospital.

The seizure stopped while en-route,  but she was struggling to breathe.  A nurse met us at the door and quickly got her hooked up to monitors etc.  They did all the usual blood draw for labs, IV fluids, O2, chest x-ray, head CT and more.  She needed oxygen for about 2+ hours and got a breathing treatment which helped.

All of her tests came back ok.  Her WBC were a little elevated so she got a dose of Rocephin.

Once she held her O2 sats ok on her own without O2 we got to take her home.  She has been very lethargic and sleepy all day.  Her fever is better controlled with meds and hopefully we can just ride this virus out over the next few days.

Josiah has been a little sick too.

This will be a week of more down time now that we can cancel our many appointments.  Not such a bad thing every now and then.

New Tube

(Yesterday)

Abby's GJ-tube replacement procedure went very smoothly!  They fit us in this afternoon, even if they were an hour behind schedule.  We were just thankful to get it done today.  Abby seemed uncomfortable last night with the slow drip into her stomach.

They didn't do IV sedation this time which surprised us... the last two procedures they did.  The doctor came to get her himself and carried her to the procedure room.  He was so sweet to Abby.  He said she probably wouldn't need deep sedation.  It took about 20 minutes.  They must have given her something through her tube to relax her or something b/c she came back a little groggy, and he mentioned that she slept through the most uncomfortable part.

She was SO hungry by 2 pm when they finally took her back, after not having anything all morning.  While we waited, Patrick distracted her by tickling.  That was the only thing that helped her stop moaning, even if for just a minute.

Baby Hunter will probably be having surgery soon.  Please continue to pray for him and his family.

Another new tube

Abby's weekend (ambulatory) EEG is over and it was able to capture at least 6 tonic clonic seizures and other questionable behavior.  The doctor should have plenty of data to examine and hopefully we will hear soon what we are dealing with.  Abby seemed rather unhappy most of the weekend and of course tired from all the seizures. 

(Finally happy snuggling with Connie after an hour of fussing in bed)

(Wearing Josiah's batman cap to help keep the wrap on her head)

(Scrubbing the stinky glue out of her hair... she gave some cute smiles)

We enjoyed some fun time with Aunt Connie and (soon to be) Uncle Matt!  The kids loved lots of cuddle time and plenty of extra attention.  Thanks for coming to visit guys!  Can't wait for the wedding!

Well, today we had some unexpected excitement.  Abby's J port came out some time during our transit from UCP therapy and home.  We found her soaked with milk once we got home... she tried to tell us, but of course we were clueless. 

This has happened a few times in the last 6 months and we have been able to "pop" it back into place.  (the tube itself is still in place)  Not this time.  It is broken.  The rest of the afternoon we continued to soak up drainage coming from the open port while we waited several hours for the nurse to call us back.   Finally she called to tell us that she wasn't able to make an appointment yet to have the GJ button replaced.  

Because it was leaking so much we had to take out the entire tube and replace it with a temporary G-tube.  It went fairly smoothly although uncomfortable for Abby.   I always have a moment of inner panic/turmoil during these events, worrying that something might go wrong and cause more pain for my little girl.  Thankfully she is now being fed VERY slowly into her stomach to prevent reflux and dehydration while we wait for a replacement.  

It's been over 1.5 years since we have fed her into her stomach (G port)... she isn't used to it.  The nurse should be calling tomorrow to let us know when her replacement procedure is scheduled.  She will be put to sleep again and won't remember the event.  The IV stick is the worst part for Abby.

Please pray for baby Hunter.  Patrick's cousin and best friend Bill and his wife Shannon just had a beautiful baby boy 3 weeks ago.  He is having tummy problems and might need surgery soon.  Pray for wisdom for parents and docs, as well as a smooth procedure if it is required.

Our gauze baby

Abby had her EEG put on today.  She did great except for some loud yelling when I had to hold her head still.

The tech wrapped her head in gauze, but not tightly enough!  Argh!  Now we are home and she is doing her usual head rubbing against the cough and the gauze has come loose and is slipping off.  I've tried to fix it with an ace bandage and more gauze but to no avail.  Patrick is coming home soon to help me re-wrap our darling's little head.  

You'd be amazed at how quick and sneaky those little hands are!  I'll be surprised if these wires stay in place for the next 2 days.

She looks pretty funny right now with a large tuft of hair and colorful wires sprouting out the top of her head wrap.

Her blood levels for Keppra and Zonagran came back... the Keppra level was appropriate, but the Zonagran was a little low.  The doctor wants to wait for the EEG results before making any medication adjustments.

Praying that this test will reveal Abby's true seizure activity and will give us a better interpretation into her behavior.  

Looking forward to a fun weekend with Aunt Connie & (soon to be) Uncle Matt!

(tuckered out from this mornings excitement)

26 Weeks

Now we are in the 26th week.  It's pretty exciting getting closer and closer to "safety".  I'm sure we probably seem overly obsessed with our pregnancy progress, but anyone who has had a preemie would understand.  Every day can make all the difference!  

I can't believe it's April!  Yippeee!

Over the past several weeks we've been working with one of Abby's PT's (physical therapist) to get her fitted for a new gait trainer.  We finally settled on the Kid Walk model and actually filled out the order form this week!  Hopefully it will show up anywhere from 6-8 weeks.  

She seemed to do pretty well in it during our practice sessions.  It has some neat features such as bouncing action, hip sway side to side during walking, and large wheels for the child to push themselves.  She obviously can't propel herself yet using the wheels, but she does put her hands on them and shows interest.

(Josiah playing with Gigai at UCP during therapy)

Tomorrow we go back to the neurologist to have another ambulatory EEG placed.  Abby will wear the wires all weekend to record seizure activity.  Hopefully it will pick up what we have been seeing lately.  Abby has done better this week and has had fewer seizures.  Although this sounds weird, I hope she has those strange seizures during the test so the doctor can give us some answers and we can form a good treatment plan.