Wednesday, April 28, 2010

Downsides of having a blog

When something notable happens you write it on the blog, but you forget you've done that and you want to tell your friends whats been going on...but they already know--from the blog--and you get real depressed. Been having a lot of one-sided conversations with my friends. If you and I talk more than once a week stop reading the blog! Kind of just kidding. Glad you all care.

...Seriously, you know who you are (evil glare)...

Sunday, April 25, 2010

Home again--Home again jiggity jig

We got home from the hospital on Friday in the afternoon. They were very efficient in discharging us and we did not even have all of our stuff packed by the time they came in with the paperwork. I totally appreciate that. No lp was done, but nothing grew out on the cultures either. No reason for the fevers that we can determine. BUT they're over with. She has not had a fever since Thursday morning. However, now the hurdle is teething. Since Olivia doesn't hold toys up to her mouth anymore teething is a three month process to get them in. Her front bottom two teeth are on the verge, but any gum rubbing has amounted in the biggest tantrum I have ever seen from her, and though we, of course, do not like to see her in any pain, its interesting to see a whole need side to your child--actually acting like a baby. I know it sounds mean, but she didn't cry or need things emotionally for a long time. Now, wow...what a different world.
I have actually just escaped the couch for the first time this morning to pee because Olivia would only cease the screaming when she is laying on me on the couch. So, yesterday afternoon and this morning thats what we have been doing. I finished my book, so its a lot of TV, which, I will have to say, even with cable is not terribly interesting most of the time. It is somehow both fulfilling and friggin exhausting having a child with emotional needs. I realize this happens for most moms right out the gate, but we have stumbled on this a year in so Brian and I have some adjusting to do.

Speaking of Brian, I am so proud of him! He is managing to be a wonderful dad, an amazing husband, and a great student and employee all at the same time. He is working on a huge paper due at the end of the semester (probably about 60 pgs) along with other homework and two jobs. I got flowers the other day on a whim, and he has been incredibly available to help me with Livi especially since we came home from the hospital. I appreciate it while it lasts while realizing that one person cannot possibly keep this up for four more weeks at full force. But graduation is approaching and I can wait for him to be done with school before needing alot of time with him.

And speaking of time with Brian, my mother, the amateur travel agent she is, is planning a quick trip for just Brian and I somepleace not too far away for early June, after graduation and before the surgery. This will be the first trip Brian and I have taken since our honeymoon and though we love Olivia, she will be staying at our house in KC with grandma and grandpa. It will be difficult for me to stay away and not worry, but some wonderful time regrouping with my husband,

oh---unhappy baby--duty calls

Wednesday, April 21, 2010

Par for the course

So...I am now writing from a hospital room at children's mercy. Livi has been battling a cold the past week and a UTI the week before that, but the antibiotics proved to help. In the last week she has been spiking random fevers, the most severe of which happened yesterday afternoon about three o'clock up to 105.8 degrees reported in triage. She continued to spike over 103 at midnight and almost 104 this morning at 6am. They have tested everything. All negative. Big shocker. Their best guess is virus, but I think thats just a formality they have to say. If her baseline continues to decline (I don't know how we would know-she sleeps all the time this week anyway) then they will do a lp (spinal tap) and check for meningitis. We are for sure staying tonight. Past that we know nothing.

We would appreciate prayers, of course, but we are well taken care of, as usual. Our friends have been at our beck and call and even a grandpa made it through security last night to see us in the ER. :)

On another note, Livi's surgery has been scheduled for June 23. Much later than we were hoping and this throws off a lot of plans we had for the summer, unfortunately. Olivia and at least Brian will not make it to Aunt Mal and Uncle Allen's wedding in Arkansas July 10. We are devastated to say the least. I hope to make it as long as Olivia is doing well, as we expect her to be, but expectations are flimsy in this house.

One of the nurses noted that we hadn't been inpatient in a while--a guess a while is three months because we were here in January. Par for the course. I guess stays in Nov, Dec, and Jan get medical professionals to arrive at certain expectations.

We'll keep you updated for sure. Thanks.

Thursday, April 15, 2010

sickness, sickness, go away

I haven't written this week because Olivia has been plagued by what doctors think must be a virus. Last week's trip to the ER in the middle of the night turned out to be a UTI. She is finishing up meds for that, and started on Monday with this low grade fever, snotty nose and cough, high heart rate and an increase in oxygen requirements. After a negative urine test, a clean chest x-ray, and nose swab, it is determined that she must have some kind of virus and will take just time to get over it. It has taken just that--time. We went to the ER on Wednesday afternoon, almost stayed the night, but then was released. She is doing far better now than on Tuesday or Wednesday, but both mommy and baby are friggin exhausted from interrupted nights.

On another note, a happier one, Brian called today to tell me that he was one of the two students selected at seminary to speak in chapel this spring before graduation. It is a very big honor to be asked and he definitely plans on taking this opportunity as long as Olivia's surgery doesn't interfere.

Olivia is quiet and breathing well, so I am going to take this opportunity to try and go to sleep. we'll see how that goes...

Tuesday, April 13, 2010

Oh, Spring, I have missed you so

Really there is not much better than a seventy degree sunny day with a breeze--as long as you get to be outside. I take full advantage of nap time which allows me to be outside digging up my yard and soon-- planting! In the hopes that we will take full advantage of our patio this year, I am attempting to beautify it to my liking so we are more likely to sit outside and talk and have fun rather than laying on the couch watching tv on a beautiful day. I know not everyone likes the warmer weather as much as I do (Livi and Brian--both sweaters when it comes to heat) but I'm going to try and convert them since the porch is almost always shaded by the tree. It would even be worth it to invest in an umbrella if need be--that is, after we have gotten some kind of appropriate patio furniture.

Here are some pics of things outside of the house that I brought inside--to enjoy during not-naptime. The peonies are almost in bloom and the azelia bushes are being planted, with all luck, by the end of the week. The rest is up in the air, but on the schedule for soon.

Livi also had her 12mo well check yesterday and got all of her live vaccines. This lead to a slight fever at 4am (despite a few doses of motrin beforehand). Today seems better. She was actually awake long enough for me to wash her hair and change her clothes. Now its back to naptime. And mommy is on her way back outside.

Thursday, April 8, 2010

So tired

I can't believe its already 10:30. I don't know what time it feels like, but not that. The past few weeks have been great, but too busy to think. Now that its calmed down I have time to think. I don't like having time to think.

I held back tears a lot today and cried a lot tonight. I grieved for the loss I thought I had in my daughter several months back--grieved for myself. Today, I am grieving for her. The process is, if you can imagine, more painful. I wish that somehow I could take on whatever has overtaken her little body and let her do the things her brain is telling her to do. I know that she understands much more than she can tell me. She has opinions and desires. I know she has favorite toys and colors and wants to crawl more than I've ever seen another kid want something. But she can't tell me the things she wants. She can't, most often, point to them or grab them. I rely solely on what I think her eyes are telling me. I am learning, but I have not perfected that art yet. She wants to crawl, and I help her, but I can tell she wants to try on her own. Laying on her belly she kicks her legs, but won't move her arms. She does not get anywhere like that. I try to interpret her "more" and "all done" hand motions like the teacher told me, but her arms are so sporadic it is really difficult and I think I am wrong with what I assume most of the time.

Mostly I try to pretend like it doesn't bother me and everything will be okay. In some way I have to believe that, or I can't get up in the morning. But the 'snapping out of it' we had hoped for in January has not come. It is spring now and while Olivia is improving. It is very slowly and it is very exhausting. But we can at least be grateful for that. I just guess I decided to be honest and while some days are okay, some are not. Today is one of those.

Wednesday, April 7, 2010

Catching up, really...

Oh gosh do we have a lot to "catch up" on. Lets start with the weekend. The party was a fantastic success! We had ALOT of fun and ALOT of people came. It was a great celebration of life and friendship. Livi did sleep for the first hour, but awoke in time for singing 'happy birthday', and getting to taste a small bit of icing, which she loved! We also raised a little over $200 for children's mercy hospital, which we are proud to present since they will be aiding us so much with our finances this year.

getting ready to blow out the candle
Squishing the cupcake
Chill'n with Aunt Mal's glasses after the party
On Monday at PT (physical therapy) we spoke with a social worker at mercy about our financial situation. She made some calls and our primary insurance will supply the pediasure (which has already been delivered) for just $75 at cost to us-- what we have budgeted for her food anyway. I think it would have been several hundred dollars a month for us to buy it on our own, so that was a real win. Also, our social worker spoke with the lady in the financial aid office again and she has already filled out the application for Olivia for disability. We will see what happens, but a lot of folks are doing their best to help out.
Tuesday morning at 3am Olivia's pulse ox alarmed (mostly if she knocks off her oxygen or is awake during the night). This time she was awake but it was alarming because her heart rate was so high. She also was running a 104 degree temp. We went straight to the ER and just like last time, it went down with one dose of Motrin and some sleep in two hours. Nothing on the chest x-ray, no known infection. Got our antibiotics and came home around 7am.
Tuesday afternoon we had a neuro appt and it went fine. No real issues, just doing a check up before the surgery. I think the neurologist was a little disappointed she was not progressing more quickly since the slowing down of the seizures. Though she is moving along, we all were a little sad she didn't just 'snap back' after the new medicine. Instead, it has been a long road.
Tuesday night we had a big storm. Tugger is afraid of storms and usually hides on the bed upstairs. He was up there for 2 hours and I went to check on him. On the first lap around the upstairs I could not find him. On the second lap, I found this...
Today at cardiology was fine. EKG, ECG as usual. Looks good. They schedule the surgeries every week at a conference. This week was already full so they should call next week or the following week with the date. Could be weeks, could be months. Whatever the schedule says.
We are all doing great, but it has been an extra busy couple of weeks and we are wiped! This weekend should be a great time for recovery...

Thursday, April 1, 2010

Bored with Baby Einstein

This is Olivia watching her new Baby Einstein DVD I bought her. I know in the picture the TV is blacked out. I swear she is watching it.

This is Olivia less than 10min guessed it! FALLING ASLEEP IN THE STANDER! AGAIN! I give up! Stander=Sleeping girl

We're Rich!!!!!

Not really. But thats what the lovely people in the MoHealth Net offices think. So, we do not qualify for secondary insurance for Olivia through them starting Monday. This would be reason to panic since our primary insurance does not come close to covering 100% of Olivia's expenses, but the Lord is good and provides in his ways and time. This time, it will be in the form of financial aid through Children's Mercy that apparently we are sure to qualify for and sure to pick up all of her expenses our primary doesn't if its a service we are getting through the hospital (clinic visits, surgeries, meds, etc...).

The only downside to this is our home medical equipment comes through another company. Our insurance usually pays some, but we will have to start picking up the rest. That could be at least another couple hundred dollars a month, but I don't know for sure. It will get hiked up since we are ordering yet another machine (Bi-pap) today. That brings the total DME (durable medical equipment) count to 5 in our house, plus all of their attachments and accessories. That also means that we will not be getting pediasure delivered to the house and paid for as expected. Oh well, that was just a perk.

Please be praying for us and our finances. We know there are people who will help, but we would like to ideally just raise the extra support so we don't need the extra help. The other thing is, the income restrictions on SSI are not as strict, so our financial advisor at Mercy directed us to apply for disability for Livi which would help in several ways. This, of course, is a lengthy process. We will try to be patient!

Lastly, we saw genetics clinic again today. They are sending off for variant DNA testing on some tests they have already sent off. I guess we will keep our fingers crossed.