The Results (Sort Of)

We finally got the call for the doctor's office about Lizzie's sleep study results. The doctor has cancelled her decanulation (trach removal) procedure set for next month. We are all very bummed because we want the trach gone for so many reasons, but on the other hand, we understand that Lizzie needs to be safe while she is sleeping. They found that when she sleeps with her trach capped off, there is some obstructive apnea occurring. This is where the "sort of" part comes into play. Obstructive apnea can have several source, like enlarged adnoids or tonsils, or the tongue falling back too far in the mouth to block the air passage. The source of her obstruction is unknown at this point. It may be related to her partial vocal chord parallesis. It will take more time and tests and procedures to determine exactly what is happening there. And, the main point is that the doctor did not feel that she was safe enough to remove her trach.

I spoke only to the nurse whose job it was to report their findings and conclusions to me and had very few answers to all of my questions. They set us up with an appointment on the 18th of August to see the doctor, and I plan to come ready to ask a lot of questions. My fear is that the appointment to remove Lizzie's trach was cancelled pre-maturely. I sure hope the doctor did not forget that Lizzie already sleeps with bi-pap at night which can be a solution for obstructive sleep apnea. I guess we will find out soon enough.

Go-Go

This is footage we took during Lizzie's family party for her second birthday at the end of June. It was one of her first times to roll around the house after our wood floors were put in about week and a half before her birthday. We call her wheeled stander her go-go, and she has gotten very good in it. Thanks to the wood flooring, Lizzie is able to wheel herself around the whole house as she pleases. The other day I caught her rummaging around our silverware drawer while standing in her go-go. She was licking each spoon and putting it back in the drawer!

Sometimes It's Good To Read The Paperwork

Every time we go for an appointment or procedure with Lizzie we are handed a stack of paperwork. Mostly they are patient's rights and privacy policies which end up in my "to be filed" pile on my desk without a second glance. However, for some reason this time David decided to look through all the paperwork from the sleep study. He knows I have been really feeling impatient about not hearing any news from the doctor about the study results, and I've been threatening to call in myself instead of waiting for the call as we were instructed to do. So, David found an interesting page in the packet of paperwork which he very sweetly placed on my side of the bed. It is a letter from the sleep study clinic that said we would receive a call about the results about 14 days after our appointment. 14 DAYS?! AHH! We have a ways to go yet. I'm trying my best to hang in there. So much is riding on the results of this study.

But, for today I'm off to Scottish Rite for a full day of appointments. We are going to start the wheelchair process. Maybe I should make sure I read all the paperwork today.

Waiting For Results

This past Thursday afternoon the sleep study clinic called me and said that someone else had cancelled their overnight study for Friday, and we could take that slot if we wanted it. Although it was really short notice, I jumped at the opportunity. If we have to potentially squeeze in two studies before the 15th of September, I figured we'd better get started. We were on the waiting list with the clinic because they were already booked until October when the doctor set the dates for everything.

So, Friday night David and I packed our hiking day packs with travel blankets and pillows, a change of comfortable warm clothes including wool socks and Keens and Dave's computer with a bunch of movies to watch. We looked like we were ready to go camping! Our nurse Deborah teased that maybe we should take our fire starting kit and a rug to send her smoke signal messages. But, we really did need all this stuff and were very grateful to have it and use in a new context. Parents can sleep in the same room as the child being tested, but I was concerned that Lizzie would not sleep well with us in the room with her because she has her own room at home, and I wanted to make sure that the study went well. So, while Lizzie slept, David and I "camped out" all night in the waiting room. It worked out well.

During the study, two things were done. First of all, after hooking Lizzie up to all these wires and bands all over her whole body but mostly her head, they had Lizzie sleep with her trach completely closed off for about three hours. Then, they took the cap off her trach and had her sleep with it open. I'm not too sure for the reason behind this part of the study. Maybe they needed data points to compare. Anyway, the tech said that Lizzie slept well, and they were able to get some really good information. However, only the doctor is legally allowed to interpret the results.

So, I am sitting here on Monday morning waiting for a call from the doctor that I am not certain will come today. I will keep you posted on the results as I hear them.

Pray For Non-Healing

I know I have not blogged in like, well, forever almost. I made a personal determination not to blog again until I cleared off all the old picture files I have on my computer that are really slowing it down. Well, between a family death, two birthday parties, a minor surgery, and four trips this summer, it just hasn’t happened. So, my new determination is to not post new pictures to my blog until I clear off the old ones. That will happen soon, I hope. : )

So here’s what’s the most recent thing going on with Lizzie. The ENT doctor would like to de-canulate Lizzie. In laymen’s terms, take her trach out permanently. WOO-HOO! HOWEVER, several things will have to fall into place before this could potentially happen on September 21st, or we will have to wait a full year to start the process over again. (They will not de-canulate during cold and flu season.) Number one, we have to find out if she still needs to sleep at night with a bi-pap machine for a form of sleep apnea. Number two, if she still needs it, can she tolerate a bi-pap facemask. She currently sleeps with the bi-pap connected directly to her trach, no mask needed. This means we will need one if not two overnight sleep studies to determine all this. I loath sleep studies. We’ve had several the past two years, and they are nothing short of torture for child and parent. A necessary evil I guess.

If it is determined she still needs bi-pap, the trick is how to get her used to a mask between now and the 21st of September. Bi-pap masks suction hard to your face in order to function properly, and to ask a two-year-old to suddenly accept that is near impossible. I don’t think we could just one night suddenly strap in on her head and expect her to be all right, but on the other hand, if we show it to her and play with it too much ahead of time and she doesn’t like it, she may see it coming and never learn to tolerate it. And, we can’t practice a few hours at night and take it off and switch back to the tube connected to her trach, that might confuse a sleeping brain and potentially cause her to stop breathing altogether. AHHH! Please pray for wisdom and insight for our good but very big dilemma.

Now here’s the other part. If we are able to get the trach out, we will go overnight to the hospital for the big event. The doctor will place a special bandage over the whole in her neck and will give it three months to heal up on its own. If it heals on it’s own during that time it will leave an ugly scar on her throat, and Medicaid, Lizzie’s secondary insurance, will not pay for plastic surgery to make it look pretty. If the hole does not heal on its own at the end of the three months, the doctor will do a surgery to close it, and while he’s at it, he can make it look pretty. Go figure. So, for this reason among everything else, we are praying for non-healing. : )

Baby Steps

These are Lizzie's feet. No, she is not pointing her toes on purpose. Her right foot is somewhat clubbed, and the muscles around that ankle are atrophied. Next Wednesday, April 8th, she will have a minor surgery to hopefully correct the problem. The doctor will make an incision on the really tight tendon on the back, and skillfully cut the tendon in such a way that it will allow her foot to move into a neutral position. The doctors will then make a mold of both of her legs to use for making her first set of leg braces, and then put a cast on her right leg while it heals. I think the doctor said that she will be in the cast for about 3 months. (This is not her first time to wear a cast. Check the posts from last summer.)

One interesting thing about this surgery, is that Lizzie will be completely awake the entire time. Because she does not have any feeling in her lower legs or feet, the doctors will not knock her out. They will, however, give her a local anesthetic just to be on the safe side. I will not be allowed in the room while they are doing all of this, so Ms Deborah, our favorite nurse, is going to come on her day off to be with Lizzie in the OR. This is a huge relief to me. I know that Lizzie will freak out in a room full of strangers holding her down. Ms Deborah's presence will be a huge help.

I am not too sure how I feel about all of this. I am in tears just writing about it, and I don't know why. She has had seven previous surgeries, and they were all more serious than this one. She has had one surgery on her spine, four in or around her brain, one to put in her feeding tube, and one tracheotomy. I think i just hate the thought of any surgery for my baby girl. I think also that I am so used to seeing her foot like it is now, and I am mourning the change even though it is a good one. We have a terrible time getting shoes to stay on so I mostly put her in socks that look like mary jane shoes or ballerina slippers. This surgery will ultimately provide Lizzie with more independence and normalcy. Maybe it is because soon she will be able to practice standing up which means she is growing up. Lizzie is my baby that has stayed a baby in my heart for a long time because she can't walk. (Her mental development is on target the most part.) We carry her or stroll her everywhere like a baby even though she is almost 2. I am so grateful that David will be taking the day off to be at the hospital with us. Ms. Deborah will be there for Lizzie, and David will be there for me. He is my rock.

Please be praying that all goes well.

Jesus and Hot Dogs

I've already shared this story with a few of my friends. I thought that I'd post it to my blog because everytime I think about it, it makes me smile.
The other day David took Becca on a little Daddy daughter date to McDonalds. She was so excited that it was her turn to go on a date with Daddy instead of Mommy. Anyway, on the way there David told Becca what a beautiful girl she is and that he loved her very much. Becca quickly replied with, "I love you too, Daddy." (Aww!) Then David asked Becca if she loved Jesus. With out thinking twice Becca said, "I love Jesus and hot dogs!"
Hope that made you smile!

What Do You Think?

My sweet friend and advisor, Kathy Goodwin, has a fabulous blog that she keeps, and I love the "face lift" she gave it a little while back. It matches her vivacious personality exactly! When I asked her who did the work on it, she not only told me about pink armchair designs, but she purchased a complete makeover for my blog as a Christmas gift! I was overwhelmed to say the least! Thank you Kathy!! Love you lots!!
So, what do you think?

Experiment

Well, our little cath-ing experiment failed. I posted earlier that we were experimenting with cath-ing Lizzie just before we put her down for the night and not again until she wakes up 12 hours later in the morning. This would free me from having to stay up until 11 pm every night to cath. Unfortunately, her morning urine outputs were just slightly too high, and the other morning she woke up with a wet diaper which means her bladder filled so much that it overflowed. (This is not good for her kidneys.)

So I am back to night time caths. However, on the bright side, I did figure out that at night I don't need to cath her exactly at 11 pm. As long as I do it before I go to bed, sometime between 10 and 11:30 pm, she is fine. That before my bedtime cath seems to take enough urine out of her bladder that her output in the morning is well within safe levels. Even though I am not free from the night time cath responsibility, at least I have some flexibility with it. : )

Third Birthday Party

The excited birthday girl!

Outside playing games.

Lizzie Shortcake!

The cake I made myself. Pretty good for an amateur, huh? It was strawberry cake of course.

Time for presents!

Overall the party was a big success. Much candy, pizza, cake, and ice cream was eaten by all. There were many many giggles, smiles, and little girl squeals. I think I had as much fun as the party guests! Lizzie's party is next at the end of June/ beginning of July. She's already chosen her theme, "Moemoe" as she puts it. Translation: Elmo. : )

PS. These pictures were all taken with my new camera!

Becca Is Three Today!

I cannot believe that our Becca turned three today! It seems like only yesterday we found out that we were going to be a mommy and a daddy. We were elated when we found out that it was a girl. We could not wait to give her the name Rebecca Marie Ake. Rebecca for her great grandmother on her daddy’s side and Marie for her great grandmother on her mommy’s side and for her mommy.

Our precious angle so sweet and easy to care for became a big sister at the tender age of 15 months old. She immediately stepped up to the challenge of being a special needs sibling. Becca is a complacent, cautions, patient, caring, helpful, eager to please, imaginative, funny, and joyful member of our family. The Lord knew the extra challenges she would face as Lizzie’s big sister, and she continually impresses me everyday with her willingness to help mommy and the nurses and to encourage and love on her little sister. We are so very blessed to have Becca as our child. Happy birthday big girl! We love you so very much!

Camera!!!

I am so very excited!! I am getting a new digital camera. David totally surprised me and used some money he had stashed away to order a new camera for me. Our old one has been M.I.A. for quite some time now (see "Please Be Praying" post). I didn't realize how important our old camera was until it went missing. It's been a bit rough too because our camcorder is on the fritz. I've been really frustrated with not having any way to document our family's life the past couple of months. The new camera is actually a lot nicer than our old one. It should arrive just in time for Becca's third birthday party a week from tomorrow. I can't wait to post the new pics!

Our Day At Scottish Rite

We had a great and very full day yesterday at Scottish Rite. We had an AM appointment with the neurologist and a PM appointment with the urologist.

At the neurology appointment we were able to report that it has been almost a year since Lizzie's last seizure. (The last one was last April). He said that's great, but they like for their patients to be seizure free for two years before they start reducing the medication dose. He said that if you think about it, she is growing, but we are not increasing her dose, so it is kind of like it is reducing itself naturally in a way. It's really no problem to me for Lizzie to stay on her anti-seizure medication. She only takes one, and she doesn't seem to have any side effects from it.

At the urologist appointment, he said that her kidney ultrasound looked fine. Praise the Lord! (We had that ultrasound two weeks ago.) I was also able to discuss Lizzie's cath-ing schedule. We were cath-ing her every three waking hours, and letting her go for an eight hour stretch at night. The night time thing has been a bit of a trick because she sleeps for twelve solid hours. So, I've been sneaking into her room late at night to cath her. She sleeps on her tummy, so I wear a headlamp and cath her upside down. Am I good, or what?! Anyway, we have been getting really low urine outputs at her first morning cath, so the doctor said to try cathing her just before bed and not again until morning. He said that if her outputs were still low, we could stop doing the middle of the night cath. Last night was our first night to try this, and the output was low the next morning! Hurray! No more late nights for me, unless I want to. It's not a requirement anymore!

On a somewhat related note, we are experimenting with not running Lizzie's feeding pump at night. (Another liberating thing for me.) If she eats well enough during the day, there is really no need to run it at night. However, the only way to find out if she is eating enough during the day is to stop the pump feeds at night and closely monitor her weight. So for so good, and this seems to have improved her daytime appetite. We've only been doing this for about a week now, so I will keep you posted.

Well, it's late, and I am up just for me. : ) I'm off to bed!

New Nurse

Our primary and most beloved nurse, Ms. Deborah, has been faithfully and loving caring for Lizzie, and really the rest of our family, for well over a year now. She comes to our house every Monday, Tuesday, Thursday, and Friday. Every other Friday night she stays until 11pm so that David and I can have a date night. And, anytime that we go out of town for a retreat with the students or a romantic weekend, Ms. Deborah stays all day and all night at our house with Lizzie while we are gone. Both of our girls love Ms. Deborah so much! She has been a huge blessing to us, and we all feel that she is a part of our family.

However, on the days that Ms. Deborah is not here, there have been a hodge podge of nurses in and out of our house filling in those other days for well over a year now. Some have been really good, some have been terrible. Some last for a few months, and others never come back after the first time (per my request to the nursing agency). It has been so hard on Lizzie and on me. There were times when I would come home after being gone for a couple of hours to complete chaos and total disregard to my instructions. Lizzie is a very sweet and very sociable little girl, but when she won't smile at a nurse, I know that there is a big problem. There have been times when I've considered putting in a nanny cam in my house to see what really happens while I am gone. There have been way too many times when poor David has come home from work or a late night with the students to a wife who is about to explode with frustration and anger and tears over the days events. UGH!!!

I've had a request in to our nursing agency for one nurse to cover our Wednesdays and weekends for some time now. Unfortunately the best that they could do was to fill those days with those random nurses, UNTIL NOW!!! A new nurse to the agency has offered to take on those days with Lizzie, and she is good! I am soooo very excited! This means that Lizzie will have only two nurses, both of whom do a great job, and plenty of good back-ups in case one for her two nurses have an illness or family emergency. Finally! Things are looking up!

Please Be Praying

There is a lot going on with Lizzie right now. They are all good things, but they do need some prayer.

1. Some time ago the ENT (ears, nose, and throat) surgeon gave us the all clear to try and cap off Lizzie’s trach. If we are successful at capping off her trach, this means that would could potentially get rid of the trach altogether. It can be a lengthy process with many small steps involved to building up her tolerance to having her trach capped. Well, we have reached the capping stage and are working on increasing the time she spends capped off everyday.

However, I am not completely convinced that her vocal chords work at 100%. She had surgery over a year ago to take the pressure off of her brainstem in the hopes that her vocal chords would start to function properly. From all appearance, this was a success. But, every time we cap her off, she appears to be working too hard to draw in a breath. We have her hooked up to a pulse-oxometer machine, (it measures pulse and heart rate) and all of her numbers look fine. But, when you look at her chest, you can see it moving much more than would be expected for each inhale.

We just had a CT scan and a follow up appointment with her neurosurgeon this week, and she said that the scan looks great and things look even better than they did at her last scan a year ago. When I mentioned my concerns with capping her trach, the doctor had two thoughts. She said that although we were successful at taking the pressure off of her brainstem there could be some underlying issues with her brainstem itself as evidenced by her need for bi-pap at night and her vomiting problems as well. She said that it is possible that the ENT needs to take a closer look at Lizzie’s vocal chords again and do some further testing and observation to see if they are in fact functioning well enough to have her trach capped.

Pleas be praying for this situation as I am not sure what this all means in the long term. . . a trach forever?. . . more surgery?. . . everything will work out fine?. . . I’ve had to train myself to not look too far down the line with Lizzie. It can feel very overwhelming, I just have to trust the Lord for one day at a time and love my baby girl as she is right now.

2. The second thing going on with Lizzie is her feeding. She eats (or should I say struggles to eat) approximately 1/2 jar of stage 2 baby food three times a day along with a bottle of formula at each feeding. She has a very sensitive gag reflex so we have to take it slowly and carefully. She does an interesting tongue thrust move with each bite as a self-protective method to prevent us from putting the spoon too far into her mouth causing her to gag. She puts up a fight with each bite and we are doing everything we can, short of pinning her down, to get her to eat. We listen to music, play toys, act silly to make her laugh, anything we can think of to distract her mind for the fact that she is eating. The process for each meal on average takes about an hour and a half or more. It is exhausting and requires an extra large dose of patients.

The good news is that she is starting to feel more and more comfortable with different textures, which I hope will one day lead to her eating normally. Please pray for Lizzie, I feel like we are really pushing her to the ends of herself with this, but it is for a good reason. Please also pray for patients for the nurses who have to contend with this three times a day.

3. We are really working with Lizzie on her mobility, strength and endurance. The orthopedic surgeon wants to know that she is physically strong before he will do the surgery to correct her right foot. After the surgery, and after the cast is removed, they will look at getting her a wheeled stander. (A wheel chair you stand in.) This will allow her to do some weight bearing on her hips and legs to strengthen the joints and bones, and allow her some upright mobility. Right now, she army crawls to get from place to place. But, she has to be strong enough to be in an upright position. (Her lower half will be supported and strapped into the stander.)

Once again, we are really pushing Lizzie to the ends of herself with the amount of physical therapy we do with her each day, but it is for a good reason. Please pray for a good evaluation appointment coming up at the beginning of April. I would love for this to happen sooner rather than later to allow Lizzie more independence.

4. Please pray that I find our digital camera. It’s been gone for about a month now, and I can’t find it anywhere. I don’t think it would have been stolen; it wasn’t a very expensive one to start out with. I think I just left it or put it in an unusual spot. But, I am starting to get concerned.

Cinderella's in da' House

We gave Becca a copy of the movie Cinderella last March for her second birthday. I’m not a big fan of all the princess movies because their villians are just too evil for my liking for my little girls. But, Cinderella’s villian is not too terrible or scary in my opinion. Plus, I like the message that Cinderella was beautiful because of her inner and outer beauty.

Anyway, Becca of course has decided she really likes the movie, and for a while, she would ask to watch it on a daily basis. Someone gave us an old flower girl dress that Becca wears as her Cinderella dress. Over the past few months the costume has expanded to include a pair of hand-me-down tap shoes as Cinderella’s slippers complete with a plastic tiara and necklace.

Becca even made up her own Cinderella game. She will put on the full costume, run to David, and say, “Dance with me Daddy!” She and David will dance for a minute or so, then Becca will suddenly say, “Oh no!” She will take off running, kick off one of the tap shoes, and say, “Get me Daddy! Get my slipper!” So David will chase her around the house with the other “slipper”.

I decided to try to get Becca off this Cinderella kick and on to something else. (Before it was Cinderella, it was Dora.) So, for Christmas, we gave her a Strawberry Shortcake 2 DVD set. The cover on the box showed the first movie with Strawberry Shortcake and a pony, and the second one showed Strawberry Shortcake playing dress-up. “Perfect,” I thought. “We can finally move away from Cinderella.” I was so wrong! In the Strawberry Shortcake movie about playing dress up, Strawberry Shortcake and her pals all act out the Cinderella story! Becca is in Strawberella heaven! (Groan)

Lizzie's Eyes

Sorry, no cute pictures to go with this post, but this is some good news!

We took Lizzie to the eye doctor a little earlier this week. He told us that her eyes look much better, (We have been patching her right eye for two hours everyday for the last four months.) but they still don't work in unison at 100% yet. He told us that for now we can continue to put off surgery to correct the problem. He wants us to continue to patch it as before for another four months. Then, at that point one of two things will happen. 1.) Her eyes will work great with no further need for corrective measures. 2.) Or, if the problem still exists, the doctor wants to try glasses before the more extreme surgery option. Lizzie has a pretty significant astigmatism (not surprising given her neurology and heredity). He told us that this could be causing some of the eye crossing issues.

I am happy to try the glasses over surgery any day! Anyway, I think babies in glasses are so adorable! It's funny, as a child, I purposely picked out a Cabbage Patch Kid with glasses because I thought it was cute, and now I might get my own real baby them!