Wednesday, December 30, 2009

Try as I might...

I cannot get this video of Olivia to load right. Guess I'll have to leave that to the husband when he can get around to it. Tuesday night she had a wonderful night of playing, just one or two seizures, and an hour of talking. We haven't seen our daughter be our daughter like that in months, probably since September or October. The video is a minute of her talking. Its really funny and I will keep trying to get it up.
Today seizures have been minimal as well. We had three appts today and during the last, therapy, she did well and only had one or two during that hour of intense work. That is wonderful for her. Of course, the goal is zero, but we will take an improvement for now.

I also found a book called "Road map to Holland". Its not written by the same woman who wrote the poem, but a different woman whose son also has Down syndrome. She did write it for all women and families who have children with special needs. Its basically her memoirs of the first two years of her son's life. While it makes me cry most often, it also makes me feel like I'm not alone. The things you think and never want to say out loud, I've found, have been thought, said, and even written by other women, namely in this book. Its a wonderful resource, and while it is specific to a family with a child who has Down syndrome, it will speak to everyone. The NICU experiences, glances from people in public, concerned 'whats wrong with her' questions...all thats the same. Its nice to know someone made it through that without going nuts.

Thanks again for your prayers. The Lord has blessed us, at the very least, with a few days of minimal seizures. We always hope and pray for more good days, but will take what we can get. We love you all and appreciate you so much!

Tuesday, December 29, 2009

Things to celebrate!

Home from the hospital already, which is in itself a win. Its even better news to hear that the nurse spoke with us and the anesthesiologist this morning before the MRI and they decided to try it without any anesthesia. In theory this means that Livi has to not only sleep, but lay completely still for about 25min. They came and got us an hour later and she needed no anesthesia, no IV and looked awake without seizures when we saw her. What a trooper! What great staff people they have at Mercy--always thinking of the patient and the family and not what is easiest for them.
A few hours later, when we were at home and meeting with the respite care group who is all ready to come to the house whenever we want, our doctor called saying that the MRI has been read and there is no structural abnormalities in her brain. The MRI can only check structure and not function, but the structure side looks fine. No blood, tumor, lesion, etc.. which is great of course, but also on the flip side gives us no leads with why things are happening.

Thank you for your prayers and thought and in the effort of taking things one day at a time please celebrate with us a wonderful day for our family!

The "care conference" with her doctors and us will be scheduled some time either Monday or Wednesday of next week. We, of course, will keep you up to date.

Somber Days

Livi's seizures have been worse over the past few days with new types showing up as well as all seizures being more intense and perhaps more often. We have hardly seen her awake not seizing in the past two days--perhaps an hour or two all together. Yesterday we had appointments concerning her MRI which will be done today. While we were there we also called neurology telling them something else had to be done with her medication. They gave us a very strong new medication in the Valium family that she only takes a little bit of. Its hard to tell if its working. Its not supposed to stop them all together, but rather to stop these 30 min cycles of seizures at a time. We should find out today if its working. Of course we will have to wait for her neurologist to come back in town to definitively decide what the next medication step is, perhaps that will be prompted by a specific MRI.
Today we take her at noon for a 1pm MRI. Normally this is not a huge issue with kids and is always outpatient, but the chances of them having to intubate her because of the anesthesia is pretty good, and there is less of a chance that she will not be extubated today, thus landing her a bed in the PICU, which they have already reserved for her just in case. My honest thought is that she won't need it. Guess we'll see.
The MRI is of her brain and we are very anxious to hear about the results considering the onslaught of seizures since her last MRI which was in NICU (and totally normal). The MRI could show the reason for the seizures or the effects on her brain of the seizures from what I understand. If there is a tumor or a lesion they can decide that is what is causing the seizures and if there is abnormal tissue this is most likely from her huge amount of seizure activity.
The whole point of the MRI (though we would want it anyway) is to make plans for the heart surgery while we wait for other tests to come back in. Next week Brian and I will have a "care conference" with I think all of her specialists and we hear everyone's point of view concerning if she should have the surgery and when. Ultimately Brian and I make the decision. Daunting, to say the least.

Please pray for our peace and grace today to deal with what our doctor tells us tomorrow. She is calling with results no matter what--I told her I couldn't wait a week for "bad" results to make it into her office, so she could call me. We have absolutely no idea what to expect. None.

God is good all the time. All the time, God is good.

Saturday, December 26, 2009

White Christmas...getting whiter

We had a pretty good Christmas this year. It was Livi's first, and though she was asleep virtually the WHOLE day, she woke up for two hours or so and opened up her presents.

Her first Christmas also turned out to be a pretty white one...and its still snowing here as of 3pm on Saturday. We haven't seen the rest of our family (Dad, Mom and Mal are here) because none of us can get very far down the street. Mom and Dad are just now thinking of venturing out to the grocery store and hopefully to get some entertainment. We've watched movies, did a puzzle, ate, and the great entertainment so far is watching our neighbors try to pull up their driveway (steep hill).

It was not what I pictured her first Christmas to look like. You always think of kids wanting to tear paper (or at least eat it), play with toys, excitement...but it was not like that. Since we upped her medication, she slept literally until about four o'clock in the afternoon before she really was awake enough to be photographed. But, such is our life...for now.
She has had a good day so far today. Still lots of sleeping, but played without seizures for about an hour this afternoon.

Here are some pictures from our Christmas. Hope you all had a wonderful one too!

Thursday, December 24, 2009

Thank you Santa!

We got what we consider an early Christmas present yesterday during our neurology appt...let me start from the beginning though.

Whatever Olivia is dealing with in her body can, according to the neurologist and other specialists he conferenced with last week, only be one of two things. The first is a disease. This means it is foreign to her make-up genetically and the cause of her loss of skills could be attributed to the fact that the disease is progressing. Usually this is a bad prognosis, as you could probably imagine. Secondly, it could be the way she is made up, probably meaning there is a hiccup somewhere in her genetic material (though they have already done a in-depth study on this) and the loss of skills is attributed to the increased seizure activity of the past few months. I would imagine (though I did not ask directly) that if this were so then the ground she lost would be recoverable by stopping the seizures and continuing therapy as before. This prognosis is not bad. Our neurologist thinks, though he cannot prove it, that the possibility that these problems Livi has is a disease is 10% and the possibility of them being a direct result of seizure activity is 90%.

The weight of that is incredible. For example, if we are talking about possibility number 1 (disease) and it is progressing, they usually don't stop, which would mean that she would probably die from whatever disease they attributed it to. If this were the case, then they would also question the ethics of the heart surgery because at that point, is it the most effective treatment if you are just treating for comfort?
Possibility number 2 still says something is wrong (syndrome) but that is a part of her make-up and with curative treatments or therapy she could learn to live, at least on some level, with the syndrome.

So, could he be wrong? Sure, but he doesn't think he is. Does this mean everything will be ok? No, of course not. But it also probably will not be as bad as if she had a progressing disease eating her body. Do we still need to find out what it is? Yes.

So the plan of action is to double one of her seizure meds to see if we can get control of those by her surgery date (Jan 7) so we don't have to push that back since she is not currently ill and we have made plans around the date. Could we push it back? Sure. As long as we get it in within 6 mo. but we would rather do it now if its in her best interest.

Does this make sense to everyone? Sorry to be so full of confusing material. If you have questions either call me or post them.

I am also beginning to consider (with the encouragement of several people) the possibility of getting a home nurse for a few hours a week to rest, sleep, clean, etc... I imagine to some people this seems frivolous as it did to me for the previous months. Isn't that just a glorified babysitter? But Olivia needs constant attention and supervision, even asleep, and this makes normal household chores difficult for me to finish during the day. It is a big step for me to accept this kind of help as I used to feel it challenged my ability to care for my daughter, but friends have questioned my motives (pride) and allowed me to consider the benefits for my life with this help. We shall see...

Looks as if we will be snowed in for Christmas. Shucks. :) We, of course, will be posting pictures of Livi's first Christmas. One more milestone. Thanks be to God!

Tuesday, December 22, 2009

More of the same...

We visited genetics today. More of the same. They have been conferring--with each other, with other doctors--they just don't know. They ordered some tests but think they will all serve to rule out syndromes. They were all very nice and helpful in answering questions, but we're all a little tired of coming up with no answers. We will be following up with them soon. They, of course, have to get urine for one of these tests, so they put this bag on Livi and then send us down for blood workup in the lab. Apparently pissing kids off with needles actually makes them piss. Livi was no exception, but she happened to find her way out of the bag. So, pee all over the exam table--none in the bag. So we have to go back upstairs to have another pee bag put on and we wait...and wait...for another hour we wait for Livi to pee. Seriously, a bunch of grown adults putting off their afternoons waiting for one kid to pee. She's a gem.

Tomorrow is PT and neuro. Doubt we will find anything exhilarating out there, but we'll at least get to talk to our doctor.

Today we also talked to the palliative care team at mercy. They serve families whose kids are sick, some dying, some not (thats us), most inpatient, some out(again us). The woman was very nice in explaining what they do and she has an MDiv as well, so very encouraging to be able to be frank with her about where our hope is. That was the best encouragement we could have gotten. She gave me a binder to feed my organizing side and in one of the flaps of the binder was a poem written by a mother of a child with special needs. She was trying to explain what the experience was like for her and she likened it to a trip: so, you're planning on going to Italy and you plan your trip with books, learn some Italian, perhaps, expect to see all the wonderful sights--what everyone who has been to Italy has said. You get on the plane and while the plane is descending the stewardess says, "Welcome to Holland". But you didn't sign on for Holland. You've been planning for Italy. Everyone else who has been to Italy has told you all about it. You get off the plane and realize that while its not Italy, Holland is beautiful. They speak a different language and the sights are mostly different, but Holland is nice. In the back of your mind you also grieve the fact that you expected Italy, but got Holland. But isn't Holland beautiful?

I get it and I think its beautiful. I figure we will get to know Holland even better than we have before. We will grow to love Holland, but at first we will grieve the thoughts of Italy and how we had always planned for Italy.

But isn't Holland wonderful?!!?!?

Friday, December 18, 2009

New Wheels

No, we didn't buy a new car. We went to physical therapy yesterday to meet with a vendor from United Seating and Mobility and to order some appropriate seating devices for Livi. We have ordered a new stroller base and seat combo called a Kid Kart. Its basically a wheelchair for babies. This will help us tremendously at home, because you can take the seat base out of the stroller base and put it on the floor in your house. It keeps her head secured, there is a tray to play on, laterals that keep her body from shifting, and feet stirrups that will keep her from doing her signature whole body extension- making it difficult for anyone to hold her. The Kid Kart will really help her train her body, and really help me out at home because she can play without me holding her, so now I can look at her face! I was going to post a picture of it here, but I'm not sure of the legal repercussions of that, so you can google it if you want or find it on the United Seating and Mobility website.
We have also ordered a new bath seat called a manatee. Do you think they're trying to say something about her weight?...NO! It really is called that, but she will have to get a size 0. Its an adjustable lawn chair type looking thing with straps to hold her in that we put in the bathtub. Right now the water overflows from her infant bath seat but the water barely reaches her bellybutton! This might be more fun and helpful.

I realize that getting these special devices will do two things: 1. make our lives easier and livi's life more therapeutic and working towards a good goal of wellness. 2. identify us as a family with a special needs child from as far away as people can see the Kid Kart (its pretty big and bulky)
Don't get me wrong, I am not ashamed of my daughter or anything that comes with her. We love Olivia and are so proud of who she is-- all of her, but I realize that this will cause people to look at her less with admiration about how cute she is, and more with pity. Perhaps my biggest problem is that people will look on me with pity.
I had a very pointed conversation last night with a good friend of mine in which she challenged my idea that this is our life and it is not more stressful than anyone else's. We all have stuff to deal with. She was not impressed. I love my daughter and taking care of her, but Maggie, my friend, suggested that the level of care that Olivia needs is not decreasing as with most aging children, but perhaps increasing. To me this does not suggest that I need visits from at home nurses to help me catch a break or a steady babysitter so I can go indulge myself in something, but perhaps I should consider that we are going to live differently than most other people, and that perhaps requires different needs and more people's help. I feel like I have grown alot in my allowance of others helping in day to day things in our lives and totally appreciate it, but maybe I have further to go.
Hopefully with time, and the Lord's help...

Oh, shout out to both sets of grandparents. Thanks grandma and papa for the visit! They are leaving tomorrow morning and we are SO sad! Texas is a very long way away and we will miss you!
Mama Marge and Papa Don, we are excited to see you on Saturday! We know wild horses wouldn't keep you away for longer than two weeks! :)
Aunt Mal, can't wait to see you in a week! YAY!

Monday, December 14, 2009

Quiet(er) Day

Who knew that a shots appt at the doctor would turn out to be the least traumatic dr visit we've had in a while? Go figure.
We're hoping to cruise through this week relatively unscathed with appts everyday, but secondary appts--except of course tomorrow when they have scheduled a 7:30 EEG for Livi. Apparently this requires that both her and I wake up at 4am tomorrow and do our best to keep each other awake. Apparently the people in the EEG lab have not met my child. There is no way in hell this kid is staying up if she doesn't want to. They say "music, lights, cold air, whatever it takes". Know what it would take? The second coming--anything short of that will not be worth waking up for, according to Livi. All I can do is try and lie to them when I get there are tell them she just fell asleep in the car. These are the instructions from the doctors who have met Olivia. :) Seriously, they told me to lie to the techs. I'm throwing those doctors under the bus with me if they give me attitude tomorrow at 7:30am after I've been up for almost four hours too. Believe me.

We are also anxiously awaiting the arrival of grandma and papa from Texas. They are coming tomorrow night. They better bring the warmth with them.

Here are some pictures from the last few days. I swear we don't lie around and sleep all the time...

Quality time...

Almost napping with Mr. Elephant...

Family cuddle time...seems like someone is missing????

Friday, December 11, 2009

Pictures from the last few days...

I LOVE smiling for my daddy!

Still trying to figure out the Christmas tree...

Getting ready for my bath!

Good days

Thank you all for your prayers. Livi's last couple of days have been encouraging and full of joy and hope for us. She spent time sucking her pacifier last night, played and smiled today with her daddy. Though she still is hardly moving, we can move her hands and she will feel faces etc and seems interested in looking at things at least. These signs give us hope that a recovery would be possible after the surgery.

We also spoke with our wonderful pulmonologist this morning. She says now she can hear the murmur where she couldn't before and seems sure that Livi should have the surgery pretty soon. She is also encouraged and curious about what she found on the CT Scan last week. Our doctors are all wonderful and working together marvelously to bring about the best plan for Olivia. Per instructions of our doctor today Livi will remain on oxygen full time at least until the surgery and then post surgery they will consider doing her sleep study early to see if she has some apnea issues.

We know there are worse days to come, but we live in the good ones while we have them and remember them during the bad ones. When I can get a picture of Olivia not sleeping I will post one. :)

Thursday, December 10, 2009

This week just keeps getting more interesting...

First of all, Livi had a great day today. She was awake for several hours at a time, which is pretty rare any more. She also tried to play with some toys and wanted to suck her pacifier when she went to sleep--all things that are reassuring and helps us to stay positive in the midst of the news from the rest of the week...

Monday we met with a new clinic--rehab. They mostly work with therapy for specialized equipment and things like that. We admitted that perhaps she had lost some skills that she had acquired around month three or four--or perhaps she was just too tired to do things any more, but either way it had been too long since she had rolled over, played with rattles, etc... This, as we knew it would, greatly worried the doctors and now plans will perhaps be changing for Livi.

Our neurologist was notified, but could not get an earlier appt for us than the one we already have (Dec 23). Also, an MRI is being scheduled for just before the end of the year (Dec 28) along with an appt with Genetics (Dec 22) and waiting for some other test results to come back. Now the concern is that Olivia's neurological supposed regression will cause recovery issues after the heart surgery and they do not want to risk that. The heart surgery is important, but not immediately urgent and can be performed a few months down the road.

That is the short version. Brian and I are praying and hoping for more good days than bad and that perhaps this regression in skills is just due to a tired girl. Perhaps God will answer our pleas and heal Olivia. We are always hopeful that God will have his way; we hope that includes the health of our baby. Thank you all for your thoughts and prayers. We could not ask for anything more helpful than that.

I did forget the camera on the way to the dr. appt yesterday, but I will make up for it tomorrow--promise.

Tuesday, December 8, 2009

Surgery Scheduled

Livi's open heart surgery is scheduled for January 7th. We are very nervous but trusting the Lord more everyday as things emerge. With that on the horizon its hard to focus on Christmas, but we're going to do our best to make Livi's first one very memorable. We will be staying in Kansas City during the holidays to make sure she doesn't contract anything that would cause the surgery to be rescheduled.

Yesterday we saw the rehab clinic at mercy for the first time and they seemed very concerned, not only for Livi, but for Brian and I--knowing that families who have to endure so much stress can start to crack, but we assured them that our support system (all of you and more) are making things very comfortable and easy for us. We just wanted to use part of this time to say that we could not make it through every day with such sanity without you all. Even if we don't see some of you often, we have peace knowing that you are praying for and thinking about our family.

Some upcoming appts include therapy tomorrow (of which I will probably post some pictures of Livi eating and stretching) and an EEG followup for next Tuesday. Hopefully an EEG with information will help the doctors choose a better and more efficient medicine(s) and aid them in finding out why this is happening. We would LOVE to find a way for the seizures to stop all together.

A lot of people are asking how Brian and I are coping. It is obviously difficult, and not every day is easy or good, but mostly we feel very loved and supported, making the hard days a little better. Mostly we just don't know what to expect or plan for. We have no idea if she will get better or worse and at what rate either of those will happen. We love her very much and are more than dedicated to helping her at home and in finding the best doctors, but even this brings exhaustion on occasion. Because of the increase in assistance and medical equipment and doctor's appointments, we have been forced to face our pride and learn to accept help and to understand this gives God glory and joy to others. Thank you all for bullying us around and helping us to see that it really does take a village.

Saturday, December 5, 2009

Going Home

Well, Livi has her own plans about going home. We were expected to go home yesterday, but after a night of fevers and high heart rate the doctors decided to keep her another night. She had a pretty good day yesterday--the pain from the biopsy mixed with whatever upper respiratory infection she has is making it tough--but definitely more herself now.

We missed the cardiologist yesterday (thats what I get for wanting to get some fresh air) but expect either a visit today or a phone call and office visit to schedule the open heart surgery. We're not exactly sure when, but probably just around Christmas time.

Might have some more small victories this week as we see a rehab doctor for the first time (monday), have her initial exam with children's center for the visually impaired (tuesday), PT/OT (wednesday) and pulmonary (friday). She keeps us busy!

Also, thank you again to everyone for the prayers and awesome support. We will be needing it again after the upcoming surgery as her recovery is very extensive (she will be taking it easy for months)

This girl loves her daddy!

Thursday, December 3, 2009

Round One Finished

Livi is now out of recovery into a room just for overnight. She did beautifully! She came out of post op EXTUBATED! YAY! It was a wonderful sight to see (and hear, as she was obviously not very happy about the pain and didn't have a problem letting everyone know it). They finished all three procedures and we are awaiting results.

We say round one because during the heart cath the cardiologist found that the ASD (atrial septal defect) was actually bigger than they thought (actually 10-14mm) and could not be fixed with a coil which could have been done during the cath. The plan now is to schedule open heart surgery for sometime in the next few weeks to a month. During the open heart surgery they will patch the ASD and tie off the PDA (the second defect that was much smaller and not too much of a concern for them). The outcome of this should be more energy and less respiratory problems for Livi.
Of course Brian and I are nervous for this next step, but we know that the doctors here are very capable and that ultimately the Lord has her and our whole family in His hands. We appreciate all of the prayers and words of encouragement.

Wednesday, December 2, 2009

Tomorrow is the big day!

Tomorrow at 7am we will be carting Livi to same day surgery at Mercy for her heart "procedure" and a few other appts. About six weeks ago cardiology found two congenital heart defects and also found she had pulmonary hypertension. They are doing a cardiac cath tomorrow morning to measure the exact pressure in the enlarged part of her heart and checking to see how big the two defects are. If they pose a problem, they will just coil them during the procedure. (No big deal, right?)

Since she has to be put out (not "put down" as Brian has been known to say) everyone wants a piece of her. Pulmonary is getting a CT scan and Neuro is getting a muscle biopsy. She will stay for at least one night so they can perform a follow-up EEG on Friday morning to see how her new medicine is working. Hopefully they'll change a dose or a med because I can tell them she is still seizing on the meds quite often.

Really Brian and I's biggest concern is getting her off of the ventilator. She will have to be intubated for the procedure, but for most kids, its an outpatient procedure and they go home the same day. Livi has not been great at getting off of the ventilator so far, so we are hoping we won't be there through the weekend.

She is obviously losing sleep over the procedure...

Tuesday, December 1, 2009

Getting Started

Thanks for looking us up.
We wanted to start this blog for those of you who are always asking and wondering how we are doing, specifically how Olivia is getting along, so I finally gave in and decided to make life easier for everyone. BEWARE, I am a virgin blogger. Please excuse my lack of skill. The gist of this is to let everyone how Olivia's medical situations are progressing and how we are doing as a family getting through it. Thank you for your prayers and concern. We love you all.