We met with Dr. Raja, Hannah’s new neurologist on Thursday.   Like every other neuro office we have had to wait in this city, we were waiting for over an hour before we got into the room.

However, when he came into the room and sat down, there was just something different about his demeanor compared to the other neuro we have seen here.  He was curious, attentive, asked a lot of relevant questions, and admitted that he didn’t know how Gaucher’s directly plays into her neuro issues.   I love when doctors admit that they don’t know everything but are willing to work with me and “partner together” in Hannah’s care.

He asked me what my main concerns were neuro-wise, and we discussed her seizure disorder and her movement disorder.

I told him that I made the decision to up Hannah’s Klonopin slightly (up 0.5 mL t.i.d.) after we got her level back (it was 11, 30 being low-normal) even after her other neuro said she just wanted to sit and wait.  Both Hannah’s nurse who was with me and I both shared that we have noticed better control of her movement disorder on this higher dose.   Even Hannah’s infusion nurse noticed that Hannah’s hand movements were more controlled at her infusion on Monday, this without me telling her we had upped the dose first.

He made the comment to me that next time I feel that the dose needs to be upped to let him know.  He knows that I am the one that knows her best, especially in light of her unique circumstances.  Obviously I am not going to drug up my child on purpose, so this was reassuring to get that kind of support.

He also made an interesting observation which I need to look more into.   He said that Hannah’s body was not spastic (which we knew), and that because spasticity isn’t one of her symptoms right now, with intensive PT and OT, she should be able to continue to build up muscle strength.  Admittedly we had been slacking in that area, but not anymore.

We are going to do an overnight EEG in a couple of months (after flu and RSV season) to see what exactly is going on with Hannah at night…seizures, apnea, etc.  We both don’t think it is a good idea to expose her at this time with an overnight stay in the hospital because she isn’t having any serious issues at this point.   If things become more pressing, then we can move it up.   Sounded like a great plan to me.

He seems like the kind of doctor I had been hoping for.   Very compassionate, open, and willing to work with me in getting Hannah comfortable and under control.  Of course, after getting disappointed after the two previous neuros, I’m going to wait before I get all excited.   I’m keeping my fingers crossed!

You grow up thinking that you are always supposed to move forward in life.   Rarely sideways, but never backwards.

2010 was a really crappy year for us financially (among other things obviously).   With Daddy being out of work for 7+ months, paying double rent/mortgage on two homes for another 7 months, paying COBRA insurance for the family for 8 months, and me not being able to work because of Hannah, we have incurred quite a bit of debt this past year.

We have been searching these past few weeks for a new home to purchase because our lease is up here at the end of May.   Our “needs” and our “wish list” items are admittedly quite numerous.   We NEED to have a one-story house, stay in the newer part of Henderson, little or no steps outside or inside the house and an open floor plan (knowing that we will likely be needing to get Hannah a wheelchair in the next year), decent backyard, 4 bedrooms, 2 baths, and a 2 car garage.   We HOPED to get a house with a second master-size room (to move all Hannah’s med stuff in there plus set up her room), decent sized kid rooms, kids staying at their elementary school, a separate master shower/bath, 3-car garage, and a separate space for an office.

Because of our newly acquired debt and because of the fact I really haven’t brought in much of an income for the past two years, what we were approved for is the lowest we have ever been approved for in the 15 years we have been together.   Definitely an “ouch” realization moment.   Since we lost all the equity in our Texas house when we sold it, we are basically starting over like a first-time buyer.

The combination of what we were able to be approved for plus the specifics of our “need” list, there really isn’t much available to us in this area.  The schools in this area are the best in Vegas (which is saying a lot), so any other area is just not an option – we will sacrifice space and luxury for good schools.  Many of the houses that Daddy initially checked out (as he does the first round with our realtor since I am usually just going to sleep) were either a bad layout, in horrible condition, or just had a bad feel to them.    There was one house that we both really liked that fit many of our need and wishes, but it was about $15k over our price point, and since there were multiple offers, the odds of getting it lower than list were slim.

Then there was the one he took us to today.   Daddy and Abby saw it yesterday, and Daddy felt it might work.   It fit every single one of our needs but none on our wish list.   But reality is, our “wish list” probably comes with a $25k higher price tag at the very least.

I liked the open-ness of the kitchen and the huge family room, lots of space to move around if we need a wheelchair.  The three kids rooms are really small (10×10), and the master is a decent size.  Two car garage.  One little step from the outside into the house that can easy be ramped.   About 1900 square feet.

The house was definitely not taken care of by its previous owners, you can tell  (Ask Abby about the porn magazine picture taped to the ceiling in the living room).  It is now owned by the bank, so I’m assuming it was a foreclosure.  All carpet would all have to be replaced, especially in what would be Ethan’s room, as that carpet is completely destroyed by cat urine.   New window coverings because the current ones are pretty thrashed (except for Abby’s shutters).  The walls would need to be spackled and repainted.   We would need an electrician to fix many of the pulled out outlets.  Many of the fixtures and door knobs would have to be replaced (since quite a few of them are gone).  The backyard would have to be completely pruned down, as it is grossly overgrown.

Despite all the issues with the house, it has a good feel to it.   Something I feel that we can make work and enjoy.  We are going to put an offer in on this house.  We came to the realization that we are just not in a position to purchase our dream home right now.  So our plan is to stay in the house for the next 4 or 5+ years, fix it up, and make it a home.  We have no idea what needs we are going to have for Hannah in the next few years (being optimistic and hopeful), so we need to just settle down and make this home into what we need.   This will give us time to pay down our debt as well as build up some equity for our next home, assuming that the market is going to go up within the next 5 years here.  It can’t go much lower!

I do like this house, and I think it will work for us.  Is it my dream home?   No.  It is a definite downsize from our previous homes in terms of space and luxury, but in the end, all that really matters is that we are together, and we will make it our home.

One thing I do know, if we get this house, Home Depot is going to LOVE us!

I fell asleep soon a couple of hours after we got back from the fantastic fundraiser at the Children’s Specialty Center (more on that later).   Daddy had to take Abby on an errand, and Ethan stayed downstairs playing on the iPad while Hannah was with her nurse.

I woke up to Ethan screaming to me, “Mommy!  Wake up!  Something is wrong with Hannah!”   I kept asking him what was wrong, but he just kept yelling at me to come downstairs.  Half-awake, I scrambled to throw my jeans back on (why, I don’t know) and ran downstairs.

I saw Hannah gasping a little bit with her head in her nurse’s lap.  Her nurse seemed frozen and kept calmly saying, “I’m not sure what is wrong.”   Hannah was starting to turn a tinge of blue as she does when she has trouble breathing.

Knowing Hannah’s “sounds,” I immediately knew exactly what it was.  Her trach was more than half out even though it was still attached to the trach ties.  Therefore, the gasping was her having trouble getting breath because it wasn’t in the right way and basically she had an obstructed trach.

Unlike the night before, Hannah actually wasn’t completely panicking, so I was able to get the trach back in within about 2 or 3 quick attempts without having to resort to a smaller size.   Ethan ran to turn on the oxygen, and it only took a minute or so for her to perk back up.

Even though her nurse kept saying she didn’t panic and that she “just needed some help,” I could see this visibly shook her.   You can’t fake body language and increased breathing.  Ethan was even more collected after it was over and went back to playing his iPad once he saw Hannah was fine.

What makes things even more complicated was that this was the second visit that Hannah’s trach had partially come out with her (she has been to our house about 7 or 8 times) and I ended up having to put it back in.

What concerns me is that I keep thinking, what if Daddy or I wasn’t there to take over and get the trach back in?

With Hannah’s two regular nurses, Hannah has had her trach come out before, but they were experienced and calm enough to know the steps to take over and get it back in.  Only twice have they needed additional help, and they were both during the time she had strep and trachiitis (her throat was sore, inflammed, and totally irritated so she breath-held more than ever).   But usually, they can take care of it themselves.

Ironically, today was the last day with this nurse as she is moving out of town and had given notice.

I am really starting to dread our weekly trach change for Hannah.   We never seemed to have a real problem until the last few months where, for one reason or another, she panics when we take out the old trach and try to put in the new one.

It happened again tonight.   I was holding her hand and singing to her while Daddy was getting ready to make the switch.   He took out the old trach, and she just started getting fussy and did not like me holding her down.  Daddy wasn’t able to get the new trach in because she panicked, tightened up her throat, and started having a breath holding spell because she started getting upset.   We immediately had to put in the smaller size trach, which thankfully is small enough to get into the hole even when she clenches, but it doesn’t go in easy.

Hannah started having difficulty breathing as Daddy was trying to get the smaller trach in and started turning blue.   I told Abby to get me the oxygen, and when she turned it on, it didn’t go on.   Ethan came over to help because he has done it before (Abby hadn’t).   He still couldn’t get it working.   Turns out that it became unplugged!

Finally, we got the oxygen going while Daddy was able to get the smaller-sized trach back in.   We let her get a continuous oxygen push for about 4 or 5 minutes until her color came back and her lips became pink again.   She also started calming down even though it took a while for her to catch her breath and start breathing regularly.

About 10 minutes later, we turned on the iPad and put on the Mickey Mouse Clubhouse theme song, and while she watched the iPad, Daddy was able to change out the small trach with the regular size one without any problems.  She didn’t even notice.

When it was all over, Daddy and I both breathed a huge sigh of relief.   I hate this trach, hate it.  But on the other hand, if we didn’t have the trach during this breath-holding spell, we couldn’t pour oxygen into her lungs as easily as we did once we got the small trach in and she was still involuntarily breath holding.

Not only do we have the big fundraiser on Monday afternoon, but Hannah is also getting her Cerezyme treatment at the same time.  She made a huge impression at the school last week with the kids, but I think we are going to let her be more low-key on Monday, as her treatments seem to wear her down afterwards.

After the fundraiser, we have her OT assessment with Early Intervention.  We need to get this done in order to get ready for our IEP meeting in May.   Reminds me we need to find an OT that can work with Hannah at home.

Tuesday, we go back to physical therapy and get some more work on the stander.  She was only able to handle a few minutes last week, but we need to keep getting her in there so she can get used to it.

Wednesday, we are having our consultation with Dr. Raja, the new neuro.  I have heard good things about him, so I hope it goes well.  We really need to get a better handle on her seizures and movement disorder.  I also think we may have to bite the bullet and get the 24-hour EEG and/or the sleep study to see where we are with the seizures.  My gut tells me that if we can get a better handle on these two issues that she would be much more comfortable.

Hannah then gets to end the day on Wednesday with her developmental therapist at home.  She loves having play time with her.

Friday evening is our Make-A-Wish meeting.  Hannah has been granted the opportunity to make a wish, and as I have said before, we really would love to take the kids to Disney World/Give Kids The World.  Just seeing Hannah’s face during the parades with the lights and music — Wow!   A friend told me to make a list of anything else we really would love to have happen, and I am thinking some quiet one-on-one time with Mickey and Minnie with some of their songs.  I know if there are too many distractions, she will get overstimulated and not pay attention.   So some one-on-one time in a quieter area would be amazing.

I need to also have her CT of the abdomen rescheduled as well because I think her spleen and liver are starting to get even more enlarged now instead of shrinking.  She may need her Cerezyme dosing upp’d.