raising ladybug

Well, Adela continues to improve.  Her mood seems good other than when we are attaching her tube.  She is doing well with her therapies and rebounding to her former skills.  She is actually making more sounds and word attempts than before.  Today she had trouble again with the volume of her feeds and threw up some.  She had fun out eating french fries and riding around Home Depot.  She played all afternoon with her daddy while I painted our white foyer ….. white!

Just a quick note to let everyone know that Adela is making more and more progress and feeling better every day.  The strength is coming back to her legs and she’s able to stand for a while on her own.  Not walking again, but it won’t be long.

Her attitude has been different since we returned home.  She’s much more lively and happy than she was before the ordeal.  Whether it’s because she’s so happy to be home from the hospital or if the new formula is making her feel better, we’re just amazed at the change.  We’ve changed up her bedtime routine so that I’m now in charge of getting her to sleep.  She’s getting pretty good at soothing herself to sleep so long as I read at least five Boo & Baa books to her.

We’re planning to have a nice, quiet, and (most importantly) normal weekend.  We’re thinking of taking Adela to the Museum of Life and Science in the morning.  It’s a nice place for her to walk around and has animals for her to see, too.

Well she had another good night.  She had one wake-up but went back to sleep pretty easy.  Today was our first day on our own – we sent daddy off to work.  Unfortunately when Adela had her first feeding she seemed uncomfortable and then threw up.  She seemed happier, but when she had her next feeding she threw up again (daddy came home).  She complained both times that her “diaper” hurt – she hadn’t pooped that morning.  We called the pediatrician who suggested a much smaller and longer feeding for the afternoon.  That seemed to help and she didn’t have more problems and she pooped.  We were able to go for a nice walk this evening and after a little resistance she fell asleep.

Adela is continuing to improve.  Two nights ago she fell asleep on her own and had just a little trouble in the middle of the night.  Last night she slept through the night!  Yea! She was a little overtired by bedtime tonight but seemed to fall asleep ok.  We’ll see how she does.  She is so much more lively during the day it is quite unreal.

Adela is doing really well. She seems really happy during the day.  Her nighttimes are still a work in progress.  She is gaining a great amount of weight and the doctors say she looked good on Thursday.  She seems to enjoy going out and about and I’ve learned how to take her feeds on the run with us.

Sorry for not posting in the past days.  Adela is doing well here at home.  She had a check-in with her regular pediatrician on Monday and had gained 10 oz. since the hospital!  I can feel her getting heavier every day.  We are still having some sleep adjustment issues but hopefully she will learn to sleep again in the middle of the night – I can’t really blame her after all those nights of midnight nurse visits.  She had a nice Easter – the bunny was good to her this year.

I’m planning to continue to post about her recovery progress as well as her other challenges.  Just a note – for people who have commented before, your comments are automatically posted, however if you are new I have to manually approve them and I am getting about 60 spam comments a day – so forgive the occasional delay.

Adela arrived home last night about 4:45  She seems very happy to be home.  She slept pretty well last night…much better than the last few nights at the hospital.  We are doing ok with our feedings at home.  The pump is pretty straight forward.  Here’s hoping we continue to adjust.

Last night’s retest of her electrolytes did show that her sodium was still a little low so we will be going home on that supplement.  The doctor said that it is her kidneys dumping the sodium but that it is just that they are still healing from the trauma.  The kidneys are not doing anything else that makes them think there is a problem with them.  Steven and I have learned how to give her her different feedings and I just learned my first lesson – don’t rush the bolus feedings – she puked!  They will be doing one more lab test this afternoon – actually anytime now.  When they get the results back (by 2 or 3) we will be cleared for discharge.  They are pulling together all our paperwork and supplies to take home.  There is also a health home care service that has been set up to provide her supplies every month as well as a few visits from a nurse to help us learn to care for her g-tube.  She already has follow-ups scheduled with her doctors.

We are just continuing to rest.  They are still looking at discharging sometime tomorrow.  She has been tolerating her feeds just fine and we are waiting to hear that she maintained her electrolytes without supplementation overnight.  We have had lots of people in and out all morning doing their check ins.  We have met with the dietitian and the vendor from the medical company, so we are set up for home.  The plan is for her to be on the continuous pump for 12 hours overnight and then 4 bolus feedings during the daytime.  They have all said it is more of an art-form than a science and it will change over time.

Adela continues to improve. Here is a rambling about today’s topics.

Her sodium is at normal levels so she doesn’t have to continue her salt treatments – thank goodness – because they were making her throw up.   She is still not sleeping a lot but the doctors seem to think its more just being in the hospital then anything else.  She is at her goal amount on her feedings (50ml per hr/26kcal) and seems to be tolerating them so far.   We are also waiting to hear about a possible diagnosis of fructose intolerance and a karyotype on her liver tissue.   Her latest blood panel shows that her hematocrit is up – which means her liver is producing red blood cells. That is a good sign because it isn’t the first thing that your body spends energy on – so it means that there is less (or nothing) going wrong in her body (like infection, etc).

She has met the goals for discharge for going home as long as she can keep up her sodiums and feedings. They are tentatively thinking Friday with plenty of follow-ups.