These past four days or so have become a total blur to me.

Daddy had to go out of state for work, and I was on my own with the three kids.   We had a shortened nursing schedule each day because Daddy also was out of town last weekend, and I needed help on Sunday.   Definitely not the ‘norm’ week for Daddy, as he usually goes out of town just a couple of days each month!

So I was responsible for everything – mornings including getting the kids up and ready for school (never fun) as well as homework, dinner, and nighttime routines.   And despite the exhaustion I felt this week, it went relatively smoothly and seamless with the kids.

Since we lost our two favorite nurses a couple of weeks ago, it has been a challenge trying to find new nurses to complete our 6-days-a-week schedule who just “fit” into our household.  So far, I think we have just a couple of days covered.   They worked 8 to 4 each day, which basically gave me enough time to get some sleep once they got here and then it was time to pick Ethan and Abby up from school and get them home.   We were all on our own for getting homework done as well as meals for the past four nights.   Usually we have a nurse here from 8 to 6 each day so there was always time for me to work with Abby on her homework as well as to start dinner.   Also, Daddy is usually here by that time so I had a partner to share this with.

Hannah has not been herself this past week.   I think it is a combination of being a bit under the weather as well as having to adjust to a bevy of new nurses.  There is a horrible sense of guilt that I feel knowing that I have to leave Hannah alone with a new nurse just so I can get some sleep after being up all night.

We even had an incident with one of the new nurses who let Hannah get so upset that she was in the beginning stages of hyperventilation.  Hannah had not been sleeping well, and she was beyond exhausted.  I only was aware of it because I happened to get a phone call that woke me up from sleep.   I heard the uneven and rapid breathing downstairs and went quickly downstairs.  It took me a while to calm her down, but I finally was able to get Hannah relaxed and she fell asleep.   It broke my  heart to see her having a definite increase of seizure activity and trying to catch her breath while she was fast asleep.

My in-laws are coming to pick Ethan and Abby up later this morning so they can have some fun with their cousins this weekend, and our only remaining regular nurse (our previous Monday nurse) is coming to take care of Hannah today  (she is good with Hannah).   Daddy is due home in about 15 hours, thank goodness!

It was crazy how much of a blur this past week was.  I don’t feel like I got anything accomplished in the house at all except for maybe washing a few dishes and med syringes.  My entire focus was making sure the kids stayed on schedule each day and were taken care of (and we even watched a movie on a school night!).   I know I took a few showers at some point during these past days, but other than that, I can’t think of anything else important LOL!

We leave for Disney World in just a couple of weeks, and I feel like I have done very little at this point!   Not only that, but we should be closing on our new house next week, and we get to start bringing stuff over and getting the new house ready to move in mid May.  Finally, Daddy and I are celebrating our 14th wedding anniversary in just 10 days – fourteen years!

We have a lot of exciting things coming up in the next two months, and I am so glad to have Daddy back home so we can start focusing on the fun and good things coming up.  He really is my partner, and wow, when he is not here, I feel like I am only a shell of myself because all of my energy is focused on the three kids!

I ran out of diapers upstairs tonight.   Being too lazy and tired to go downstairs, I found some of Abby’s old pullups in one of the baskets up here.   Since they are the same size as what Hannah would be wearing now, I used them.  Perfect fit.

But then it hit me.  Hannah is almost three years old.  Had she been on a normal development track, she would be potty training right now.  She may even likely be wearing pullups at this point.

Somewhere along the line over the past year or so, I stopped comparing what Hannah should be doing versus what she is doing at this point.  Even though I see the differences between Hannah and my younger nieces, I don’t correlate them to an age of development.  It is more like, “Oh, look what Emi is doing now.  Hannah can’t do that.”

I don’t know why seeing her in these pullups is so emotional for me.  I guess I’m looking at her a bit differently tonight.  Seeing her long body (almost 36 inches) and that face that is no longer baby or even much of a toddler anymore.

She is definitely becoming a little girl.   I see a little girl in a body that is broken but a spirit that soars.  I see a little girl who is almost completely nonverbal but yet has the most expressive facial expressions where you can interpret what she wants.  I see a little girl who has captured my heart in a way that I didn’t know was possible.

She will be three in just a few months.  THREE years old!  For those of you who have been on this journey with us from the beginning, you know how awe-inspiring it is to know that she has come this far.    My sweet little girl.

 

I was talking with a good friend of mine recently, more like venting actually, at how much it hurts that we can’t provide Hannah with the therapy and mobility equipment that we feel she would benefit from.  For whatever reason, special needs and therapy equipment seem 5x more expensive than they should be!

She suggested that we set up a medical fund account so that those people who have offered to help us (whom we have declined) can actually help us get Hannah what she needs.  So I met with our Wells Fargo rep, and we decided to go ahead and do it.

It is set up so that any person or company who donates money to this fund is eligible for a tax deduction on their donation.  Any money that we do receive from this will go specifically to getting Hannah what she needs to have a better quality and (hopefully) a longer life as well as covering those medications and therapies that our insurance/medicaid will not cover.

Those that know me know I hate asking for help, so I will only likely post about this once in a very great while.  But here are the details:

Hannah Ostrea Medical Fund
c/o Wells Fargo Bank
640 South Green Valley Parkway
Henderson, Nevada 89052

For those of you who have offered to help us over the past 9 months, thank you so very much, and thank you for your patience with me!  It is so hard to accept help sometimes, but I need to forget my pride and do what I can to keep Hannah with us as long as possible.

We lost one of our favorite nurses this week.  She had been with us since Hannah was released from the hospital back in July 2010.

She has always been so wonderful with Hannah.  You could see there was a real connection there between them.  Even Ethan and Abigail enjoyed her company.

However, these past few months she had called out more than she had shown up for work.   It was proving very difficult because it was always a rush for our agency to find us someone new, and more distressing was that Hannah was constantly having to have new nurses show up.   When we have a new nurse, there is always an adjustment period, and we can’t go on about our daily lives because of this period.

Yesterday, however, she didn’t show up for her shift at all.  Not a text or a phone call saying she would be late.  Our agency never heard from her (although this was common).  Two weeks in a row she left us hanging without a nurse, and the timing of all of this could not be worse with Daddy having quite a few out-of-town trips for work during the next three weeks.   Today I had to stay up almost 28 hours because she wasn’t there and Daddy had to go to an event for his work.

I know she was going through some personal issues, but we finally had to agree with our agency that it was time to let her go.   We can’t keep throwing new nurses at Hannah, and we also need reliability to know that when we have a nurse scheduled that she will be there.    Having a nurse miss 15+ shifts out of almost 40+ is just too much.   We put up with it because we really cared about her and how good she was with Hannah.

We are going to miss her terribly, and I honestly have no ill will towards her.   Because she had spent so much time with us over the past 9 months, she felt like she was a member of our family.   She was so good with Hannah, so good with all of us.  When we told Abby and Ethan about it, Abby got really sad for a bit.  She got attached to her too.

But it is time to move on.  Our Monday-only nurse has agreed to take on more days to help cover this gap, which is a huge relief because she also is very good with Hannah.   But I’m not sure how it is all going to come together.

I just hope we can get back into a routine where our nurses predictably show up so once we move I can work on getting my life in order, get away from the chaos we have been living in for the past few months.

I couldn’t resist getting Hannah a bathing suit today at Target.  Even though she can’t technically “swim” because of the trach, we want to be able to let her sit go in the pool with us and let her get wet up to her hips or waist this summer and at the pool at Give Kids the World.  She LOVES water, and we just feel we need to be extra careful and not let her get her water in her trach.

I saw this one, and it was just perfect!   I wanted a 2-piece because of her Gtube and enlarged abdomen, but I didn’t want a bikini top kind for the same reason.  Besides, it has a monkey on the front, and that is what Daddy calls all of the kids!

We tried it on when we got home, and it was a great fit.  I got a 5T because bathing suits always ran small for Abby, and sure enough, it was the same for Hannah.

Now I just need to find a floppy hat that will fit her head and cover part of her face, and it will be perfect for the pool!