Thankful

Thanksgiving week-- like everyone else, I stayed busy getting ready.  I usually LOVE this time of year--I still do, but in a different way.  I was so happy to see my family to spend a few days cooking and eating and just enjoying being together.  But this year has been very hard and nothing feels the same as it did before.  Even when the twins were diagnosed I didn't feel the weight of it each day that I do now. 

Something about walking this road for so long only to experience the year we have has left me feeling a little disconnected.  I miss my routine and our church.  It helped to center me in a way I'm struggling to find now.  We've tried a few churches and decided whomever wrote Goldilocks was probably church shopping at the time.  This one's too small, that one's too big, another one just doesn't feel right, and I'm desperate for just right.  I know it's out there, so we'll keep looking. 

Abby had an appointment with her GI doctor the day before Thanksgiving.  I really needed some help with her because her nausea was so much worse and I didn't know what to do.  We also met with the nutritionist who could not have been more helpful.  Abby lost a little more than 2 pounds in the month since we last saw him.  That was cause for concern.  We decided to try a different formula (again).  This is one I've never heard of.  All of the proteins are completely broken down, so she should only have to absorb it.  It only comes in 1.0 calories (she's on 1.5 now so she needs less volume).  She'll be getting less calories for a while, but the hope is that she'll tolerate it better so we can increase the volume.  We are also upping her IV sugar from a D5 to D10.  It's not much, but it offers a few more calories.  We are close to needing TPN again, and just trying to avoid that. 

Everyone else is doing well.  Hannah was home for a little break, Sarah is good and Emily is healthy.  I am beyond thankful for those things. 

This year, I'm thankful that our family is back together and we are moving along.  There are always things to be thankful for.  It's not the automatic smiley thankful for all that's good in our lives.  It's looking around knowing what could have been, and what might still lie ahead and experiencing gratitude for simply being here; for having all of my girls and my husband with me around the table, even if Abby couldn't eat.  It was gratitude for the 12 years she did eat, and as I write tonight, gratitude because not even once that entire day did I wonder what next year would hold. 

I hope you all had a wonderful Thanksgiving, and I hope you are all truly grateful for the blessings in your lives.

Hanging

I didn't realize how much time had passed since my last post. 

Listening to Emily continue to cough in the next room made me think of writing.  She's better, depending on the day, but continues to have a lot of congestion.  She runs a fever on and off, but generally has a little more energy than she did.  She went to school two days this week. 

Abby is a puzzle.  She seems to be overall a little better, but every time I go down on IV fluids she runs a fever.  It is frustrating.  Some days I get more liquids in her, but the last few days she has been so nauseous I've barely not gotten all of her feedings in.  I've decided not to mess with the fluids anymore until after her next doctors visit.  I need help with it.  I don't know what to do.  I want that line out before she gets sick again, and knowing it's not a matter of it happening, just when, is frustrating. 

I'm looking forward to the new year.  I don't know if it will be any different, but I will not miss 2011.  It has been tough. 

I'm kind-of sick of living in the world of disabilities.  I love living in a world with my girls, just not all the problems they come with.  I keep wondering what normal families do with their time.  If I didn't have to get up with kids several times a night and actually felt rested, what would I do?  If Saturday morning, I rolled over lazily in bed and realized it was after 8am, and I didn't immediately panic and wonder if something was wrong--how would that feel?   What would it be like to meet my husband for lunch because our kids were nearly 14 and we weren't so tied down?  How awesome is it to think of a vacation without first researching about accessibility, wheelchairs, side-rails, access to hospitals, and a million other details?

I know from experience that it doesn't help to ask those questions.  There are no answers and it only makes me sad for my kids and myself.  No one of us should live in the land of what-ifs.  The land of what is has to be my focus.  It's the only thing that helps my girls. 

This is very hard and Jeff and I are both tired.  We have no helpers here because we lost medicaid when we left Florida.  There is a five year wait here for it.  The girls will be adults then, if they make it to that point.  In trusting that God knew what He was doing when we came here, I have to trust that He will either supply the help we need or continue to equip us to care for them ourselves. 

I still love being so close to family and have been thoroughly fascinated with the amazing colors of fall. .  It's great to see them so often.  We are having a house full for Thanksgiving and I can't wait.  I'm just praying the girls are healthy and not in the hospital.  It would be wonderful to leave all of this behind for a few days.  n

Still hanging on is the best I can do :)

Not so fast

Emily had a much better day yesterday.  I was so relieved that her fever seemed to stay down, and though her cough still sounded bad, I felt a little better about her. 

I took her to the Dr. just to be sure she was on the up swing.  The Dr. said she had bronchitis and gave us an antibiotic.  Emily came home and ate dinner and really seemed okay.  I even considered sending her to school today.  I had a little unease about that because she had been pretty sick on Wednesday. 

Abby had an appointment for wheelchair repairs that I couldn't miss today, so I decided to find a sitter for Em.  Luckily, Jeff's aunt was available.  Just as I was feeling like I had it together, uh, not so fast.

All of the sudden, like a train hitting, her color changed.  She started coughing non-stop.  She was gagging horribly and her fever jump to 102 out of nowhere.  It was like that great day never even happened.  She was breathing fast and grunting to get the breath back out.  I held her, turned the humidifier on high, rubbed her chest with my favorite Tai fu oil (THE best stuff) and wondered if I should just take her to the hospital.  Then she would cough so bad that she seemed to have trouble taking her next breath and made me wonder if she needed an ambulance.  She'd manage to pull that breath, then do alright for for a few minutes before it started again.

Then she settled down for an hour in my arms.  All night she cycled through horrible gagging, then seemingly never ending coughing spells.   Motrin brought down the fever, Zofran helped not at all  with the nausea.  I couldn't give her anything for the congestion because it's contraindicated with her seizure med.  She did have a pretty good sized seizure after we left the Dr.'s office---that should have tipped me off, but it didn't. 

I was up all night holding her.  Her cough loosened up as the night wore on, but that just gave it an awful croupy sound.  The nausea was out of control.  I'm going to call the dr back about that.  I wonder if the antibiotic set off the tummy. 

I have a horrible headache today, it's raining, Abby still has an appointment, and Emily is finally asleep at 8:13am.  I'm sucking down coffee, taking Motrin, and praying this day gets better!   

Today is one of those days when I will need what I just don't have.  Lord, fill in the gap and help me to do what I need to for my girls today.  Amen!  (sometimes short and sweet is just fine :)

Emily

Quick post, just because I'm trying to keep up with my own life :)

Emily ran 102 fever all day.  The poor little thing coughed until she was nauseous, but she rested in her recliner and watched TV as predicted. I think I managed to keep enough fluids in her, but time will tell.  I made her a Dr. appt for tomorrow, so hopefully we won't be sent to the hospital.  Every time we go there, they send us to the hospital.  That's the problem with typical pediatricians.  My girls will always be the most complicated kids they see.  Our old critical care guys see a lot worse every day, so usually my girls are fine to stay home. 

I've always known we were blessed with that set-up.

Sarah came home from school and asked about Em.  I told her what her fever was, and poor Sarah just got a stricken look on her face and then said  "how soon before she goes in the hospital?"  I felt so bad. I hate that she automatically thinks what I automatically think.  We're both right, but seeing her little face that hasn't quite yet learned to grin and bear it made me sad.  I keep thinking of Romans 3:3-5.  That sweet girl is going to have tons of character!

Abby's hanging in there, thank you God!  I have my in-law's on stand-by in case Emily needs more than I can do, so I guess we're as ready as we can be. 

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope.  And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.  Romans 5:3-5 (niv)

Cold

I'm sitting in my room watching Dancing With the Stars listening to Emily on the monitor as she coughs repeatedly. 

I know we're in a new area and that the girls would get exposed to all the germy's that live here.  I thought I was prepared for it, but ahhhhh maaaaaannnn!  She has a tight cough and is running a little fever (100.8).  I'm whining.  I'm not particularly worried, but I just don't want another sick child.  Even for a few days.  She probably can't go to school tomorrow so I'll have them both home.  Ewwww. 

I was just thinking about how much I need a break today.  Jeff's aunt said she could come by one day this week to help out with Abby.  I wondered what I should do with a few hours.  Should I nap?  Should I clean uninterrupted?  Run errands?  Do nothing?

Oh, I know!  Take Emily to the Dr.  Typing that makes me laugh.  Honestly, Emily is easy sick.  She rests and relaxes, and if she manages to stay out of the hospital it's not so hard. 

Abby's been much better the last few days.  No crying and fussing, but horrible nausea today.  She had that awful icky color to her skin.  No fever though.  I didn't run her feeding last night because she was so sick, but I got the whole thing in her today.  No matter what else is going on, without the crying, I'm alright!

So here we go again.  Short, easy cold or yucky hospital stay?  I vote for short and easy :)