Hello friends!  It’s only been a little less than two weeks since I’ve updated, and I already feel like so much as happened these past two weeks!  I wanted to update more often, but time just doesn’t allow it with the many doctor’s appointments we’ve had lately.

For starters, Annabelle had a 1-hour EEG last Thursday, July 27 to see if they could capture any of her brain activity during one of her eye rolling episodes. She did fantastic during the test and just set back and played with her toys while the technician stuck all the electrodes on her head.  Once the test started she just played, took a small nap, and LOVED the part of the test where they flicker strobe lights in her face (it gave me a headache but she just smiled when the lights came on).  Unfortunately, she never rolled her eyes during that whole session so we knew we likely wouldn’t have any definitive answers as to the cause of her eye rolling.

Sunday we set out for Pittsburgh by 8am.  On the drive up we found out that the Ronald McDonald House (RMH) did not have an apartment for us.  Luckily, we were able to find room at a local family house that provides housing for family members of those in the hospital (like a Ronald McDonald House for adult patients).  It was a little more challenging staying here but we made it work.  Since the family house does not provide meals like the RMH we were on our own for dinner.  Thanks to a great suggestion from a local metabolic mom, we went out as a family to Schenley Plaza and grabbed some Chinese food in a beautiful park-like setting with open air and less germ exposure!  It was nice and relaxing!

Monday we had a full day of appointments starting at 9am.  First we met with our wonderful transplant coordinator who took Annabelle’s vitals.  Then we met with the hepatologist then the transplant surgeon.  After discussing Annabelle’s case, the surgeon believes that a deceased donor is still the best option for her. So we are putting the living donor stuff on hold right now (if you submitted an online form to be a potential donor – thank you!  Just hold tight and don’t run off to Pittsburgh to get evaluated!).  The good news is that we got the impression that Annabelle’s liver really would come any day now.  In fact, we were told that her name has come up a few times on a cross-match but the livers weren’t the right size for her so she was declined as a match.  However, her name IS showing up on some of the lists as they receive donor livers so that’s encouraging news to us!  We know that God has a special new liver that is the perfect match and size for Annabelle, so we continue to trust in His timing.

We were scheduled to meet with a neurologist at 11am and luckily the Wake Forest neurologist office called right before that appointment to let us know that her 1-hour EEG came back normal.  The appointment with the neurologist in Pittsburgh went very well and she saw nothing wrong with Annabelle during her physical examination.  I was able to show her a cell phone video of one of Annabelle’s eye rolling episodes. Her gut instinct was that these were simple baby ticks (something she’s just learned how to do). However, the PA does make Annabelle more susceptible to seizures so she ordered a 23-hour video EEG to be done to try to capture her brain waves during one of these episodes.  She explained to us that if they are mild seizures then we need to know about them going in to transplant. The neurologist wanted to admit us after our last appointment and go ahead and have the EEG done THAT NIGHT.  However, we didn’t think it would be a good idea to start an EEG at 2pm, get very little sleep in the hospital, then drive 8 long hours while not getting home until 9pm or later.  We opted to have it done asap when we got home.

Our last appointment of the day was with the geneticist.   This appointment was a little more discouraging as I think she just wanted to make us aware of the reality: transplant is not a cure to PA, some side effects of PA (heart problems, metabolic stoke) can still happen post-transplant, PA/MMA transplant kids tend to have a tougher time during transplant, etc.  I mean we KNEW all these things already, but just the way she said it made me feel discouraged like there was no hope for Annabelle.  I KNOW it’s not true, but it felt true in the moment. Then she proceeded to do a physical examination of Annabelle and noticed that her throat was very red.  She wanted a throat swab done to check for strep.  The examination room we were in did not have those tests so the doctor put in an order to have it done.  Where does she take us to have it done?  The most germ-infested place in the hospital – the ER!!  Really people?  Doctors give us advice to keep our metabolic kiddos away from sick people, and you’re telling me the only place to do a throat swab in all of Children’s Hospital is in a triage room of the ER?  Ughh….  Luckily, her strep test came back negative (Mike and I were not surprised since 1.) she started having a runny nose/congestion all day on Sunday likely having drainage causing the sore throat 2.) she threw up a little bit Sunday night likely adding to the throat irritation 3.) the poor girl was so tired not being able to sleep all day during so many appointments which is why she looked pale and tired around her eyes).  Then the geneticist had us scared thinking we were going to have to bring Annabelle to the hospital that night so she made sure to give us the information for the geneticist on-call.

Once we left the hospital around 4pm we got back to the family house and started checking ketones like crazy.  Luckily, they remained negative-trace so we weren’t too alarmed.  Annabelle’s congestion was bad but she didn’t act any different than normal, plus the air was dry with those hotel-like air conditioners.  To be proactive we decide to make a modified sick day formula to buy us enough time to get home in case Annabelle was getting sick.

Tuesday morning we were ready to get HOME.  If Annabelle was going to get sick then we wanted to be at Brenners where we have close access to clean clothes, our dog, and our friends/family.  We were on the road by 7:45am and Annabelle remained stable (no physical signs of metabolic decompensation and no throwing up).  We even managed to have a nice lunch in Beckley, WV at the Cracker Barrel although I’m sure we terrified our sweet waiter when we protectively blocked him from touching Annabelle (yes, we’re THOSE crazy germ-a-phobic parents).   We arrived home around 4pm and our wonderful parents were waiting for us to help unpack, wash toys/tubes/syringes, start laundry, getting Bojangles to eat (seriously, the closest Bojangles to Pittsburgh is 3 hours away!!). Having their help made the trip back home so much easier!  We all three slept SO good Tuesday night in our own beds….but it was short lived.

The neurologist at Wake Forest notified me via e-mail on Tuesday that the prescribed video EEG is usually scheduled out 4-6 weeks, but knowing Annabelle’s “any day now” situation to transplant she was going to try to expediate the process.  Well, they had a cancellation yesterday and called at 11:30 saying “get here as soon as possible.”  I couldn’t afford to take any additional time off work this week so Mike took Annabelle to have her EEG done while I stayed home and worked and cared for Daisy.  Annabelle was one hot mess showing off and smiling for all the nurses and having a good ole’ time despite having all those electrodes hooked to her head; she’s a hoot and nothing phases the girl!! Luckily this EEG was able to capture several episodes of her eye rolling and PRAISE GOD her brain activity looked normal!!  In fact, her whole EEG looked great!!  So, the neurologist concluded that these are NOT seizures but merely a weird baby tick she’s learned how to do. 

So now we are all home again and we’re going to try to rest and recuperate this weekend.  With the exception of getting some bloodwork done tomorrow, Annabelle has no appointments scheduled for next week (we’ll see how long that lasts!).  Originally we were scheduled to go to the beach with Mike’s family this coming week but we decided it’s just too much on us especially after this past week.  Hopefully we can take some time together as a family this week and have a little “staycation.”

Prayer Requests:

1. Pray that God would provide the right liver at the right time in a size that’s perfect for Annabelle.  Pray also for the family of the future liver Annabelle will receive.

2. Pray that Annabelle’s excema would continue to clear up (it’s better but not completely healed; the doctors weren’t too concerned about it in Pittsburgh so at least it won’t hinder us from getting her a transplant).

3. Pray that Annabelle’s congestion and dry cough would clear up (we’re thinking she has a cold as her ketones have remained negative and she acts fine).

4. Pray for God to give Mike and I rest and peace.  Sometimes the hardest thing for me in all of this is the constant pressure of always having to be perfect with Annabelle’s care (waking up at 4:45am to give meds, making sure she’s fed at 9am/1pm/5pm/overnight, checking ketones, measuring out formula/baby food accurately, keeping track of all her appointments, making sure information is communicated between doctors, etc). I know Mike and I are human and make mistakes, but with Annabelle there is NO ROOM for mistakes or that can put her in crisis.  That pressure of never messing up with her care can feel very overwhelming, crushing, tiring, and all of the above.

5. Pray for community for Mike and I.  We know we have friends and family that love us, but caring for Annabelle can be very isolating because we don’t get out of the house much.  And when we do we are those germ-a-phobic parents who constantly wipe things down and snap at anyone who tries to touch her (sorry if we’ve done that to you – we just can’t risk her getting sick). It’s ironic that I isolated myself during infertility because it was so difficult to be around other moms or pregnant women.  I just felt like I never fit in and I thought having a child would finally make me feel included (nothing like PA to bring down my idol of wanting a child and all I thought that would fulfill).  Now I desperately WANT community and we have to isolate not because we want to but because we want to protect our daughter.  So, this is my open invitation to reach out to us…we NEED you and can’t do this journey alone.  I get it – our life is messy right now and I know you may not know what to say (I wouldn’t know what to say to us either because what do you say to a couple whose 10-month old is getting a liver transplant soon?).  That’s OK, because you don’t have to have the right words to say.  Sometimes just providing a listening ear or giving us a good laugh is more than enough.