For The Love Of Lizzie

February Fun!

2010-02-19T18:20:00.000-08:00

February was a month of great fun! With my birthday, Valentine's Day, and an unexpected record snowfall all within a one week timeframe, there were many opportunities to get out and play!

David whisked me away for an overnight hotel stay without the girls for the Valentine's weekend. Then, he took the girls on a special daddy daughter date to make them feel special too! He is such a wonderful husband and daddy. I feel very blessed he's in my life.

Just as a side note, it is a published fact that the divorce rate among couples with special needs children is somewhere around 80 to 90 percent. I am grateful to the Lord for both our individual relationships with Him and our deep love and commitment to our marriage. When stressful times hit, we have those things to cling to, not to mention the love and prayers of those who care for and encourage us as a couple in so many ways.

And, oh, I almost forgot. Lizzie's got her cast off! Woo Hoo!

Lizzie's Leg

2010-02-06T06:29:00.000-08:00

We are so relieved! Words cannot begin to express our relief and gratefulness to the Lord. We took Lizzie to Scottish Rite on Tuesday morning for her orthopedic doctor to take a look at her x-rays and give us his opinion. Based on the opinion of the ER doctor and the orthopedic nurse I spoke to on the phone for Scottish Rite, I had mentally prepared myself for the half spika cast for four to six weeks and possible surgery.

The first person to come into the exam room at Scottish Rite was some sort of resident in training. He was nice, but seemed concerned that I had no explanation for her broken leg. He took a look over Lizzie and her leg and said that we could probably get into the casting room today, he just needed to check the schedule. She needed the half spika.

Okay, so he leaves the room to go double check her x-rays and and check the casting room schedule. He is gone for at least 25 minutes. We wait and wait and wait. Suddenly the door opens and in walks the very gray haired orthopedic surgeon who operated on Lizzie's clubbed right foot last spring. He is followed by a group of residents and nurses in training who speak in hushed tones around him. Dr. Richards! We love him, and he has taken a special liking to Lizzie. (Or at least it seems that way.) He is the oldest and most respected orthopedic doctors at Scottish Rite and we are grateful Lizzie's case was assigned to him.

He tells us that after looking at the x-ray he believes that a soft cast will do the trick this time and she should be all healed up in three weeks! He let us look at her x-ray and explains that there is no birth defect or brittle bone disease. She's just a kid with Spina Bifida with bones that aren't real dense do to lack of use. Unexplained broken legs are normal in these cases and the healing process actually makes them stronger. No surgery or anything was needed and in his opinion she looked otherwise great!

Wow! We did the happy dance after everyone left the room. After so much bad news over the years, it is really nice to hear the word "normal" and "Lizzie" used in the same sentence.

Broken Leg - Again

2010-02-01T11:53:00.000-08:00

Wow! Where to start? Lizzie has just been doing fabulous! She has new cute glasses, a new hot pink wheelchair, and a very smart mind that runs nonstop. She loves to laugh, she is learning her colors, and her favorite phrase is, "No! I do it! Hand off!" She loves Elmo, Barney, and Boz. She freely hands out hugs and "pat pats." We feel so blessed.

Okay, the broken leg part. I took Lizzie into the ER late Saturday night for a few concerns with a fever, pain in her left ear, and some apparent irritation with her trach and g-button. I figured I could be up all night with a miserable child, or I could be up all night with a miserable child and a staff of doctors and nurses that could do something about it. They asked me to strip her down to her diaper for the doctor to give her a comprehensive exam. As I was taking her pajama bottoms off I noticed that her left thigh was swollen. It wasn't huge, but I think that the way she was sitting in my lap as I was undressing her gave me the perfect view. Everything with her exam came back clear and within normal range, except for the leg x-ray.

This is the second time her leg has been broken. The first time was right around her first birthday. It was the same leg, and very near the same location (just above the knee). The doctor said that she does not have brittle bone disease (we already knew this to be true from her first incident), but that the bone there in her left leg was really thin, maybe as another secondary condition of her Spina Bifida. I'm just wondering how many "secondary conditions" a child can have. We are up to like number ten or eleven. The doctor said that there is no telling how it happened. Anything really could have caused it. They temporarily splinnted it until we can get to Scottish Rite to get the big cast on.

The "big cast" is called a half spika. It's basically like a half body cast with her right leg free. It goes up above the waist so you can't bend in the middle. Our appointment is set for 8:45 AM in the morning. So we are spending the day prepping and preparing for the appointment. We have to re-think transporting her, her clothing, and seating issues. It's a lot, and looks different now that she is two-and-a-half versus 12 months old.

She is not in very much pain but is easily agitated. Please keep her in your prayers for the next six weeks!
(The picture is of Lizzie with her temporary cast.)

The Results (Sort Of)

2009-08-05T12:56:00.000-07:00

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

2009-07-31T21:48:00.000-07:00

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

2009-07-30T05:28:00.000-07:00

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

2009-07-27T06:02:00.000-07:00

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

2009-07-18T08:19:00.000-07:00

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

2009-04-01T08:33:00.000-07:00

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

2009-03-24T12:38:00.000-07:00

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?

2009-03-23T06:23:00.000-07:00

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

2009-03-13T19:15:00.000-07:00

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

2009-03-08T20:23:00.000-07:00

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!

2009-03-01T16:26:00.000-08:00

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!!!

2009-02-27T15:44:00.000-08:00

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

2009-02-25T20:38:00.001-08:00

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

2009-02-21T06:10:00.000-08:00

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

2009-02-14T20:03:00.000-08:00

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

2009-01-15T20:35:00.000-08:00

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

2009-01-10T19:53:00.000-08:00

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!

The Princess on Her Throne

2008-11-04T14:49:00.000-08:00

The chair that we prayed for came in! We are so excited to have it! We were denied twice by Medicaid, but on the third try, they approved it.

The seat portion of this chair fits into two bases. One is a stroller type base, and the other is a base we use mostly around the house. It rolls very easily on the tile and can lower or raise to any level. It has been a huge blessing and has made caring for Lizzie much easier.

Lizzie loves it! She loves to sit in it and point in the direction she wants us to push her.

Outing

2008-10-25T14:59:00.000-07:00

We finally feel a little more comfortable to take Lizzie a few places. The doctors said that this would be alright for us to do as long as we avoid big crowds. So, for the first time since she was born, we took Lizzie on an outing. We went to the Arboretum, and she was almost overwhelmed with trying to take it all in. She kept pointing and asking us, in her Lizzie way, what everything was. It was really neat to take her out for fun to someplace other than a doctors office.

First Haircuts

2008-10-23T17:06:00.000-07:00

Both girls got their hair cut for the very first time. Ms. Deborah, Lizzie's favorite nurse, used to be a hairdresser. We fed Becca candy and sang songs with her to get her to hold still.

Brown-Eyed Girls

2008-10-21T18:20:00.000-07:00

Lizzie now wears an eye patch two hours every day to help strengthen her left eye. The doctor told us that we will need to do this for about four months. After that time, she will need surgery to help correct the muscles in her eyes. Right now, the muscles in her eyes don't work in unison. She looks through one eye, and the opposite one crosses while it is not being used. She sometimes switches back and forth between which eye she uses, but she mostly favors her right one.

When the doctor initially used the word "surgery," my heart sank. This is not one that we were planning on. We knew that she would eventually need surgery to correct her clubbed right foot, but we had no clue about an eye surgery. However, it should be a quick one, and minor in comparison to the surgeries we have survived in the past. We will trust the Lord for this.

Baby Babble

2008-10-16T11:31:00.000-07:00

When Becca was smaller she would lay in her bed in the mornings and just babble to herself. David and I would wake up to the sound of her sweet little voice as we heard it through the moniter. It was so cute.

Lizzie, on the other hand, does not have access to her vocal chords until I put a special valve on the end of her trach to allow her to speak. I've really missed hearing the sweet sounds of her little voice through her moniter in the mornings. Lizzie is also pretty speech delayed due to the decreased opportunity she has to practice talking.

However, she is a smart little girl, and she has done a really good job of picking up on sign language. She has about 8 or so words she can sign. They are mommy, daddy, more, please, eat, bird, music, her version of "I love you" and "wash hands" and "praise the Lord". She also points a lot for us to tell her the names of things. There are a few other word signs we are working on like thank you, dog, and help. And all of those are in addition to clapping, folding her hands to pray, pretending to suction our "trach" or feeding us a bottle, tickling us or herself, playing peek-a-boo, and blowing kisses.

Then yesterday afternoon I was sitting on the floor with both girls to play with them. Lizzie suddenly turns to me, holds out her arms, and starts randomly but intentionally wiggling her fingers and hands around. It was sign language baby babble! I wanted to cry. It didn't need a voice. It was music to my heart.

A Blessing From God

2008-10-04T08:58:00.000-07:00

Becca caught a terrible cold with a cough this week. I’ve spent the past several nights up and down with her to give her cough medicine and to try to get the coughing fits to stop.

My next immediate concern was for Lizzie. If she caught Becca’s cough, it would mean a lot of vomiting, first of all, and a potential trip to the hospital with a respiratory infection. I tried to keep the two girls separate from each other the best that I could, but they are sisters and they love each other very much.

A day or two later Lizzie started showing symptoms of an oncoming cold. The pessimist in me thought, “Well, here we go.” However, the Lord had a different plan. Lizzie has a head cold!

Now, you tell me. How does a child with a trach and a sister with a cough end up with a head cold? That is almost unheard of, or as David said, “That is a true blessing from God.”

A Bit Of Good News

2008-08-25T15:58:00.000-07:00

These are pictures of Lizzie in her new bath chair that we prayed for! Becca loves to help give Lizzie her "tubby".

A Bit Of Disappointing News

2008-08-14T20:21:00.000-07:00

Last week Lizzie had a study performed on her called a pH probe. They put a plastic coated wire down her nose, through her esophagus, and into the top of her stomach. The opposite end was attached to a metal box thing as you can see in the picture. We had to leave it in for 24 hours while we went through her normal daily routine. The wire and box recorded the pH levels in her esophagus to help determine if it is GERD (gastroesophogeal reflux disorder) causing her to vomit.

I went this morning to get the test results. The doctor told me that the pH levels remained well within normal range. This means that she does not have GERD and the Nissen surgery that I described earlier will not help her. It will keep food from coming all the way up, but she will still wrench and dry heave. He told me that she would be even more miserable than she is already. He also said that it is a brain issue. Something in her brain randomly triggers causing her to vomit, or so was his best guess.

I asked the doctor what to do next. He said that he would let her other doctors and specialists know, and someone should give me a call back in a few days. This did not settle well with me. I cried for about half an hour. My always optimistic husband was a big comfort to me.

Our next plan of action to talk to her neurologist about this issue. I’ve never mentioned it to him in the past because I thought it was a digestive issue not a neurological one. We already had a follow up appointment with him scheduled within the next two weeks to make sure her anti-seizure medication is still at the correct level. I will discuss it with him then.

Please continue to pray for healing. I have these awful images in my mind of trying to send Lizzie off to school one day with a vomit bucket. I just don’t think that would work. Or trying to go to a restaurant one day with her and having her vomiting set off a chain reaction among all the costumers and wait staff. (Okay, that one actually makes me chuckle a little. I have to find some humor in this or else I’ll loose my mind.)

Please pray for peace in our hearts as we trust the Lord in this situation. He has taken care of so much for us already, and I know he can handle this one too.

Please pray for wisdom as we continue on seeking solutions.

The Nurse Thing

2008-08-09T07:54:00.001-07:00

People ask me all the time how the nursing thing works. So, I decided to explain in this post.

We have 12 hours of nursing care for Lizzie everyday, seven days a week, and access to extra hours when we need them, like if we are going on a date night or out of town or something. So, when David and I go out, just the two of us, we leave four people in our house, Becca and her sitter, and Lizzie and her nurse. Our home is always full, and I kind of like it that way.

No, Lizzie is not portable at this point, meaning I really can’t take her places with me. This is due to three main reasons.
1. She has to be cathed and fed every three hours.
2. Her reflux requires us to hold her still and upright for at least 30 minutes after each feeding. So, by the time we cath her, feed her slowly, hold her upright for that 30 minute window after her feeding, pack her up and leave . . . well, it’s practically time to start all over again.
3. Her trach makes her extremely vulnerable to infection.

I do on occasion take her to church during the third service on Sunday morning. However, the timing fits in between cath and feeding times, and I only take her when it is not cold and flu season. Our church is really unique in that they have a classroom designed just for special needs children. This is where I put Lizzie, and her nurse stays in there with her to help her play and tend to her needs.

It is really sad that she does not get to go to many places. And as she gets older and more aware, she is starting to realize this fact and gets board and frustrated. For this reason, it is very important that Lizzie’s nurses do more than just come in to do the job and leave. They have to be caring and find creative ways to stimulate her mind and keep her happy.

Most of the nurses from the nursing agency that come to my house do a great job at this. We have one nurse, Deborah, who is here four and sometimes five days a week, and a couple of other regulars who fill in on the days that she is not here. Deborah is by far Lizzie’s favorite nurse, and I call her my personal Mary Poppins. She is a really neat older Christian lady who not only takes wonderful care of Lizzie, but also encourages and prays with me. I turn to her a lot for advice not only on Lizzie, but also about everything from organization to politics to life. The Lord sent her to us at just the right time, and I am extremely grateful.

What if a scheduled nurse can’t come that day, like, they call in sick that morning or something? Well, one of three things happens on those days.
1. If there is enough advanced warning, like a couple of days, the agency will call one of Lizzie’s other regular nurses to fill in on that date.
2. If none of her regular nurses can sub on that day, they will call a different nurse, and send them to our house a couple of days ahead of time to train on Lizzie’s care. Then they will come back on the available date.
3. If there is not enough advance notice, the agency will either do option one or two above minus the training time, or I can choose to not have a nurse that day. At which point I call my family and friends to come take care of Becca while I do Lizzie, because I can’t do both at the same time.

So, what do I do if a nurse does not do a very good job? Well, the nursing agency we use is also very caring and understanding. All I have to do is call them and ask them to please not send that nurse to my house again. And they say okay with no questions asked, or they will listen and take into consideration my concerns about a particular nurse is I have any.

What do the nurses do all day at my house? A lot! They take care of Lizzie as much or as little as I need them to. Meaning, they can do everything for her or just assist me. This way I can leave the house to run errands or work a side job, or just stay at home all day to care for and play with my girls. It’s kind of like having my own nanny. The nurses also keep track of and maintain Lizzie’s medical equipment. Deborah, aka Mary Poppins, even does Lizzie’s laundry and vacuums and dusts her room!

It really is a great set up, and there is no way I could do it without them!

Relief Has Arrived!!

2008-07-23T11:52:00.000-07:00

The new A/C is in and working great! AND Lizzie got her half body cast off this morning! AND I get to go spend time with some of my girlfriends this evening! Woohoo!

Praise the Lord for giving us the strength to endure!

How Do YOU Spell Relief?

2008-07-22T18:44:00.001-07:00

This weekend several commercial slogans from my childhood kept resounding in my mind. Mostly, the one for Rolaids, “How do you spell relief” and the one for Calgon bubble bath where the frazzled lady exclaims, “Calgon, take me away!”

“Why is that?” you ask. Well, let me tell you. Friday morning I heard a water trickling noise coming from the heater closet at the end of our hallway near Lizzie’s room. When I went to go check on it, the flooring that the unit sits on was completely soaked. I quickly called our landlord who made a few phone calls until she was able to find someone to come out to take a look at it. However, I had to leave to go pick up David from the airport. This was the third week so far this summer that he has been gone, and every time he left, some big crisis happens. Week 1, I broke my toe, week 2, Lizzie breaks her leg, and now week 3, our A/C starts to die and leaks water.

“No problem,” I tell myself, “our landlord’s wife will meet the A/C guy at our house while I’m gone to the airport, and he’ll fix the leak. We’ll blow a fan in the closet until it’s dry, and boom! Problem solved.”

Ha! Ha! Ha! Apparently, the emergency A/C guy was a quack trying to rip desperate customers off. An honest and dependable A/C repairman couldn’t come until the next afternoon. In the meantime, water is starting to come out of the unit in the hall and getting the carpeting wet. By Saturday morning the carpeting around the closet was so wet that it would come up between my toes when I stepped on it. And to top it all off, we discovered that the majority of the water was not in front of the heater closet, but has been pouring out the back into Lizzie’s closet where we store all of her medical equipment!

David had an event with the students most of the day on Saturday, so I was on my own to empty Lizzie’s closet and start trying to soak up the water with towels. It was a completely futile effort. I called for back up. “Mom, Dad, I need HELP!”
They came to my rescue. Our landlord also came on Saturday night to help with the efforts.

Anyway, we had to move Lizzie into Becca’s room, this is no small undertaking. And Becca has been sleeping in Lizzie’s room with the fans blowing on the now bare concrete floor of Lizzie’s closet in an attempt to prevent mold from growing.

We are supposed to get a new A/C installed today . . . we hope.

“Calgon, take me away!”

A Seat For Lizzie

2008-07-13T19:26:00.000-07:00

Lizzie’s condition and developmental delays have created some unique needs for specialized adaptive equipment. One of her issues is that she is unable to sit up yet. We have therapists that work with her, and they are very optimistic that she will be able to at some point. (Of course the half body cast has slowed her progress down, but it is just for a few more weeks.) Lizzie has outgrown most of her baby gear designed to support an infant. This includes her baby bathtub. We put in an official request with Medicaid for a bath chair for the tub that will help support her. We were initially denied. Medicaid won’t pay for one until a child is a minimum 30 pounds in weight. Lizzie is just under 20. But praise God, we appealed it, sent them some more info, and got approval!!! We are expecting it to be shipped to our house any day now. I will post pictures of Lizzie in her bath chair as soon as it arrives, and she is out of her cast.

But, there is more. Because of her reflux, we have to keep her upright for a while after each feeding. So, we have been using her bouncy seat to accomplish this, and to allow her to play with her toys in a more upright position. Well, as you can imagine, putting a 12 month old in an infant seat is somewhat precarious. Her legs hang off the end of it, which is a potentially dangerous situation. I can’t help but wonder if this is how her leg was somehow broken. Also, there are challenges with transporting Lizzie’ from room to room in a bouncy seat without wheels. We sent in a request for a seating system called an x:panda. This will provide a safe place for Lizzie to sit while offering proper positioning to help her develop the muscles needed to sit upright unassisted. It is on a wheeled base so that we can more easily move her from room to room. It raises and lowers for floor and table time, and it comes with an optional tray table. The really nice thing about this seat is that the chair portion can one day be removed and placed into a wheelchair frame. This would just be ideal for Lizzie.

However, we have received two denials from Medicaid so far. This seating system with the particular bells and whistles we need for Lizzie costs over $1200. But, we are not giving up. We are trying to send as much info as we can to prove her medical need, and we are praying like crazy. We know that the Lord will provide just the right thing at just the right time.

Please join us in praying for this seat for Lizzie.

We're Singin' The Reflux Blues - A Lizzie Update

2008-07-08T17:00:00.000-07:00

Ever since Lizzie was a newborn she has suffered with reflux. Not just an occasional spit-up, I mean full force projectile vomiting anywhere from one to five times a day. When she was a little bitty, I kept expecting her to grow out of it like most infants. When she hit about six or seven months old, it became so severe that she started loosing weight and did not want to eat. I don’t blame her. I wouldn’t want to eat either if I thought it would just make me vomit.

It has been very heartbreaking to see her suffer like this. I cringe every time she coughs, because it’s not that uncommon for it to end with her throwing up. She just looks so miserable when it happens, and it takes her a few minutes to recover each time.

When she started loosing weight, I took her to a GI doctor. He put in a feeding tube to use when she doesn’t want to eat. We found that it had the added benefit of getting the air off of her tummy from incorrect swallowing. All this helped for a while so we decided to start on some solids. Big mistake! Things only got worse again.

We have tried just about all the reflux med’s on the market, and continue to be unsuccessful in getting the reflux to stop. We have also had several tests and scans done to make sure everything was “hooked-up” okay, and it has all come back normal.

We have to feed her like a newborn, small amounts every three hours and keep her upright for at least thirty minutes after each feeding. Sometimes this helps, sometimes it doesn’t.

The other day we had a visit with our development disabilities doctor at Scottish Rite Hospital. He said that because there is an underlying brainstem issue, as evidenced by her breathing problems, medications would not help. She needs a surgery called a Nissan. This is a procedure that I don’t know a whole lot about, but basically they can tighten the sphincter muscle at the base of her esophagus/ top of her stomach. The problem is that there is a fine balance between making it too tight – you can’t eat solids, and not tight enough - you still reflux. You have to do just right, and there are only a handful of doctors in the area that do this procedure.

Please be praying for two things. . . well make it three:
1. Complete healing from the reflux, and no need for surgery at all
2. The upcoming doctor appointments with the GI surgeon
3. For the surgery to be a complete success and Lizzie’s ability to eat normally with no concern for reflux

Lizzie's 1st Birthday Party

2008-07-05T19:28:00.001-07:00

I Won, I Won!

2008-06-29T16:09:00.000-07:00

David and I ran to the Container Store after attending a friend's wedding on Saturday afternoon. I love that store, I could spend a fortune there. They were having their grand opening weekend complete with sign-ups for prizes. David and I both filled out a card and tossed them into the very large basket that was full of other entry cards. Well left shortly after that.

I stayed home this morning from church because Becca has a cold. The house phone rang and my caller id. said "Cntnr Store". When I answered, a very friendly voice congratulated me for winning the grand prize giveaway. I won a $1000.00 Elfa closet makeover! Woohoo!

I've been thinking about it. I could re-do the girl's closets. Lizzie has a ton of medical supplies that have to be kept organized, and Becca's toys could stand to be re-organized. I could also do something like our small pantry. It would be nice to maximize that space. But ultimately I've decided to give our master bedroom closet a makeover. This prize is for me, and I want to use it on me. : )

I'll have to post before and after pictures when it's all finished.

More Broken Bones

2008-06-28T20:39:00.001-07:00

Here is the latest on our little Lizzie.

Part I
On Thursday morning I went to get Lizzie up to start her routine. I quickly noticed that she was more than a little congested. In fact, she was so congested with her oxygen levels lower than usual and her heart rate elevated (she sleeps connected to a pulse-oxometer at night) that I just automatically assumed that she had pneumonia and we would need to go to the hospital. I have to admit, I was really scared. Her pulmenologist saw her a little later that morning and told us that it was just a respiratory infection and sent us home with an antibiotic prescription.

Feeling relieved, I came home and took a long nap while Becca took hers.

Part II
After my nap, I went to Lizzie’s room to check on her. Her nurse that day, Deborah, said that Lizzie’s left thigh looked swollen. It was bad and almost hard. Panicked for the second time that day I immediately started calling her doctors. I was afraid that it might be a broken bone, a blood clot, or an indication of kidney failure. David, just 30 minutes home from the second of two back to back trips with students, and I decided to take her to the ER. At about 2:00 am we finally got the bad news. Her femur just above her knee was broken.

I cried.

We had no idea how it happened. I strained my exhausted brain thinking back to everything we had done that very long day, but still nothing. According to standard protocol we were questioned by a hospital social worker and were finally discharged around 10 am.

I am very grateful that she cannot feel the pain.

Now Mommy and Lizzie both have a broken bone.

Everyday Silliness

2008-06-28T20:29:00.000-07:00

Same Song, Second Verse

2008-06-22T10:13:00.000-07:00

Have you ever had something happen to you multiple times? Like, maybe you have the exact same dream several nights in a row, or you keep accidentally biting the same spot inside your cheek when you chew.

Well, this is where I find myself this morning. Instead of going to church today, I sent Becca on with a friend, and I sat on the couch. When I broke my pinky toe last week the doctor ordered me to sit and stay seated with my foot elevated for the next 10 days. (I’m now on day 7.) Isn’t that just too bad? I have doctor’s orders to sit down, and prop up my feet, and let other people serve me.

Well here’s the ironic thing. I was in a very similar situation exactly one year ago. It was the week before Lizzie was born, and the doctor put me on bed rest. I sat on the same white couch, kept my feet propped up, and had family and friends come in every day to cook, clean, and look after Becca.

When God keeps putting you in the same situation, you know he’s trying to teach or tell you something. I think that maybe in my case, He’s just giving me a break. Last year the break was to make sure I was well rested for the year that followed with Lizzie. This year, I think the break is my little reward of rest for the year I just completed.

What do you think?

This is a picture of me on bed rest exactly one year ago. I don’t have a picture for this year, unless you’d like for me to post a picture of my broken toe. Ha, ha!

Reflecting Back

2008-06-18T20:51:00.000-07:00

Our little baby girl is about to turn 1 (on June 27th)! When I think back over the past 12 months that we’ve spent with her, in some ways the time has just flown by, but in other ways, it has been the longest year of my life. It has been truly amazing to see how God’s hand was on us every step of the way.

We have endured:
Seven major surgeries,
A total of three months in the hospital,
A few close calls,
Two ambulance rides,
Three trips to the ER,
Four trips to the ICU,
And countless doctor appointments, ultrasounds, CT scans, and MRI’s.

On the other hand, we have experienced:
Multiple shoulders to cry on,
Many hours spent in prayer,
The gift of mercy from those we know and others we know now,
Financial gifts for everything from medical expenses, to meals, to a hotel room to be near our little baby,
Jokes told at just the right time to help lighten the mood,
The opportunity to be a witness to doctors and nurses and other hospital staff,
Meals, meals, meals,
Unpacking, decorating, housecleaning and lawn services from friends and strangers – we moved in October,
A Christmas we will never forget,
And the love of Christ as so many of you wrapped your prayers and arms around us.

And for all of that, we know we can never ever re-pay, and we will be eternally grateful!

Time In The Hospital

2008-06-18T20:43:00.000-07:00

Before and After Trach Surgery

2008-06-18T20:41:00.001-07:00

Coming Home From The Hospital!

2008-06-18T20:38:00.000-07:00

Play Time With Big Sister

2008-06-18T20:36:00.000-07:00

Snuggle Time With Daddy

2008-06-18T20:34:00.001-07:00

Lizzie's Pretty Pink Hat

2008-06-18T20:30:00.000-07:00

My Girls!

2008-06-16T19:44:00.000-07:00

Broken Toes and Blessings

2008-06-16T13:12:00.000-07:00

While David was out of town on a retreat with his students, clumsy me managed to break my pinky toe. OUCH!! I passed in front of my coffee table and somehow caught my toe at just the right angle to completely snap the bone. I heard a crack, but I did not feel any pain. I quickly got up my nerve to look down and saw that my pinky on my left foot was sticking out sideways!! I thought that I had just dislocated it, so I tried to put it back into place before the pain hit. My attempts failed. I hobbled back to Lizzie's room and asked the nurse, Josesphine, if she could try to put it back into place. (This is one of the benefits of having a nurse in my house 12 hours a day.) She couldn't get it either. I grabbed my purse and keys and ran out the door to go to the hospital.

Along the way I made several phone calls including a desperate call to David, and within a few minutes we had help for Becca, whom I left at home with the nurse, and other people driving to meet me at the hospital. Wow! A couple of hours later I had extra nursing help for Lizzie to help me when her usual nurses have to leave and someone to stay the night with me. By the next morning we even had meals lined up for the next few days! Double wow!

I am so very grateful to be surrounded by such good caring friends. Not everyone has this in their life. I thank the Lord for the blessing my friends have been to me.

Well, to end this long post, the hospital sent me home with a special shoe for my foot, crutches. and a lot of pain medication! : )

We Wanted To Share Elizabeth's Story With You...

2007-04-09T19:36:00.000-07:00

...so that you would know how to pray.

This is a current picture of our family. We are expecting another baby girl this summer whom we've named Elizabeth. She will face certain challenges when she is born. These are detailed in our letter below.

Dear Friends of the Ake's,

It is with heavy hearts that we would like to share with you some recent events in the life of our family.

Last Monday (March 5) Jamie and I went to her 20 week sonogram to have a checkup on our new baby on the way. We were very excited as we were also going to find out whether we would be having a bouncing baby boy or another wonderful girl.

During the exam the technician gave us the news that we were going to have another baby girl (which we were extremely excited about as we had decided to call her Elizabeth Adele); but she also noticed a few distinct abnormalities. She mentioned to us that we would need to get more information from Jamie's physician. With only that bit of information we spent the next 24 hours with our stomachs in knots.

The following morning we met with Jamie's CNW and she informed us that the sonogram results were typical for Spina Bifida and that she would arrange for us to meet with another physician who could perform a more detailed ultrasound.

What followed was a whirlwind of doctor visits, tests and difficult meetings. Finally on Thursday the diagnosis was confirmed. Our new little daughter still growing in Jamie's womb has Spina Bifida with a Chiari Type II Malformation. I know that is a lot of technical terminology but simply put, here is what our little Elizabeth is facing right now.

There is approximately a 1cm hole in the lower portion of her back (specifically between L2-L5 of her spinal cord). This results when the tissues protecting the spinal chord fail to close during the first 8 weeks of pregnancy. There is a chain reaction of events that follow the condition. Her spinal chord is spilling out from her back through the opening (although how much is still unknown). This also causes the spinal chord to yank on the brainstem which in turn pulls
the brain against the back of the skull. This results in a buildup of pressure in the ventricles (a plumbing system in the brain to move the CSF or Cerebral Spinal Fluid) which also begin to expand and put increased pressure on the brain itself. The Chiari Malformation occurs because the Cerebellum at the base of the brain begins to slip through the large opening at the base of the skull.

This has come as a complete shock to Jamie and I. While the Dr's. diagnosis is quite certain the prognosis is sketchy. Elizabeth will have some type of physical handicap due to the exposure of her spinal chord. It is unknown how severe it will be but based on the size of the openings it could be very severe. In addition, due to the pressure on Elizabeth's brain, there is danger that it could cause some severe brain damage as well. Children with Spina Bifida have many other associated problems that we haven't even begun to find out about yet and when Elizabeth is born she will require several complicated surgeries within the first few days of her life.

So what does the immediate future hold? As we continue to come to terms with this as a family and as a mommy and daddy we are facing several months of visits with neurosurgeons and ongoing sonograms to see if Elizabeth is in any more danger. Jamie's due date is around July 22nd although we all know that babies will come when they are ready. While are hearts are definitely in turmoil right now we have comforted ourselves with the fact that Elizabeth belongs to our Lord. She will be born with a distinct personality and is a welcomed and loved addition to our family. It will certainly be a challenge for us to learn to care for her unique needs but Jamie and I believe that her relationship with Christ, and not her physical challenges, will determine the direction and significance of her life. As parents, we do not wish this on our precious daughter. Those of you
who know Becca also know blessed we are with her and how wonderful it is to have a healthy child. But we believe that she will be a kind and loving big sister.

We love you all and wanted to inform you of what we do know and ask that you pray for us. We serve a mighty God who will act in this situation in a loving and sovereign way. First, we ask that you pray with us for a complete healing of the hole in her back and that all the pressures and organs return to their normal state. Second, we ask that you pray that regardless of her condition at birth, that the effects of the Spina Bifida would be as minimal as possible. Third, please pray for us as a family. That we would cling to the Lord and his hope, that in our weak and dependant state, that we would trust in Him to guide us through the jungle of decisions and challenges that lie ahead. My personal prayer is that while people will see us
and Elizabeth endure pain and challenges, that they would somehow see Christ at work in all that is going on in our lives and that there would be a distinct testimony through our life and through Elizabeth's life.

We definitely will need your support and encouragement as friends and brothers and sisters in Christ. Your prayers, your laughter, knowing what's going on in your lives, trips to Starbucks, popping in for a visit; please do not stop doing those things. I know that it can be awkward sometimes, what questions should you ask, what shouldn't you ask? Please don't worry. We will gladly share with you how we are feeling and what we are facing. With my medical background and my
personality type I'm definitely the one to field questions and bring you up to date on all the details. As the mommy though, it is difficult for Jamie to share the details over and over. We'd like her to focus on just being a mom. She has asked that as those you who know and love us remain a presence in our lives. She needs the most encouragement as the next few months will be especially rough for her. In fact, in one of our many discussions, she shared with me "I don't want people to feel sorry for us. I just want them to roll up their sleeves and stay involved in our lives."

So that's the picture as we have it right now. We will certainly let you all know more as we find out ourselves. Please feel free to call us and check in with us. We love you all and look forward the next great thing that God is doing in YOUR lives. God is certainly at work in ours. Elizabeth will always be a loving reminder of that fact.

Because of Him we have hope,

David, Jamie, Becca and Elizabeth (Lizzie)
Phil. 3:20, 21