February 17, 2008 - A Round of the Flu

Hello all,

It has been a few weeks since our last email and I thought I would give you the latest. The funny thing is that the last few weeks have been uneventful.

I will start off with our hospital visit for Emily's upper GI exam. I didn't realize it was going to take all day! I was told to stop her feeding at 5:00 am and that she could have nothing but water until the test. I arrived at 8:30 am and was quickly put through the line of paperwork and forms. Within 45 minutes, we were in the room where it all begins. The nurse must have been a rodeo wrangler in a previous life (Although I don't believe in the whole "previous life" thing, it makes the story more funny). Within seconds she had Emily undressed and strapped into a contraption that had her head secured and five different straps holding the rest of her body in place. Her hands were strapped above her head and she looked totally uncomfortable. Needless to say, she was not happy and everyone in the hospital knew it.

The nurse then prepared a bottle of this thick white formula. She was surprised when I told her that she won't take the bottle, but was relieved when I pulled out a tube from my diaper bag. The doctor came in and quickly injected about 60cc's of this liquid into Emily's stomach. One of the keys to feeding Emily is to go slow, so this was a huge mistake. Emily was again crying her little lungs out. As she cried, I learned the reason for all the straps. The x-ray machine showed her stomach and all the fluid that was injected into it, but the machine didn't move vertically, so Emily did. It was like a rotisserie. They were turning her like a chicken over a flame; looking at her stomach from every direction.

About twenty minutes later, they finished and I mentioned to the doctor that she needs to release some of the formula or she will dry heave. She removed about 30cc's and Emily was fine. Then for the next four hours, Emily had to get an x-ray every 30 minutes. Thank God she only had to lie flat for these x-rays and they only took a total of three minutes each; but it was a long day! Emily was extremely well behaved all day and only had one crying fit that lasted about 10 minutes. The rest of the day she was happy to lie in her car seat or on her dad's lap. God is SO good!

After we had our last x-ray, we then had to go have some blood drawn. Keep in mind that she hadn't eaten since 5:00 am with the exception of the white stuff that they gave her. She was a little hungry (and so was I) and a little dehydrated. The first nurse tried twice to find a vein with no success and quickly turned it over to a more experienced nurse. She was able to get it on the first try and made it seem effortless. She was a God-send! Emily is not a fan of having needles stuck in her arm and, as I mentioned in my last email, I fight with all of my might to avoid it; although this time it was necessary.

The initial results from the test came back negative, meaning there is nothing wrong with her digestive track. We are still waiting for the results from the blood and urine test (I will spare you the details of the urine test...although very funny). We really don't think that they are going to find anything there, but better safe than sorry.

As I was talking with the doctor a few weeks ago, the problem is that she can't burp. This means that she has no way to release gas except by passing it through her entire system. The problem we are having is that it causes her pain during the last foot or so of its exit. She will usually cry uncontrollably until it passes. This is what we are trying to avoid. One solution that the doctor gave us was to have the nissen loosened. This is the surgery that tied her stomach around her esophagus to stop her from having reflux. Her thinking is that if we loosen the nissen, she will be able to burp and the problem will stop. Other problems occur, though. First, in order to do this...it IS a surgery! We don't know that we are ready to do another surgery on this poor little girl. The second thing is that it may not stop the problem, but may actually cause the reflux to come back. These are all bad things in my book. Why do something that may make things worse? We won't!

So where are we now?! This past week has been challenging for a different reason. Dawn started having flu symptoms about two weeks ago, and then Emily started about a week ago and then me shortly after that! Dawn is pretty much recovered and feeling better, but me and Emily are still in the suffering stage. She is continually coughing and has some breathing issues, I have a runny nose and I am run down 24/7. We are trying to get our rest and take our drugs to get better quick, but we will always welcome some prayer in this area.

We have started meeting with all the therapists in the past few weeks. We are meeting with the Speech Therapist once a week, Physical Therapy every other week and Vision and Nutrition once a month. Emily has been sick, so we haven't pushed her too hard. As a matter of fact, she had a meltdown when the Speech Therapist was here so we didn't get to do anything.

This week we have our appointment with the plastic surgeon. We are going to find out about the birth mark on her neck and the crease in her skull. God willing, there are no problems and these things will work themselves out naturally, but we will find out more on Wednesday.

We also have Dawn's sister and family coming in for the week. We are looking forward to seeing family and Dawn is looking forward to having a few days off from work!

In general, things are getting better every day that goes by. We have our "tummy time" and Emily is getting stronger each day. She has a big head to hold up! (All that hair, you know) The last two nights, she has slept through the night without the 3:00 am screaming! This is a blessing for all involved. We don't know if it is because of the drugs we give her before she goes to bed (for the flu) or if she is just getting used to the pump. Either way, I am not going to complain, seeing that I am the one who has to get up with her when she cries.

The vision people say that she is doing much better and although she needs some work, they are very optimistic that she can overcome the challenges. It may be some time before we know how well she "really" sees, but she can follow objects and tries to grab things in front of her. These are good signs.

We are truly blessed, and as usual, we want you to know that we are praising God through every trial and every success. HE is good and we are blessed! We also want to thank all of you who pray for us regularly. We continually have people tell us they are praying for us and asking us how things are going. Some days I feel like a broken record telling the stories about Emily, but I don't mind because she is such a huge blessing and it gives me the chance to praise God for all that He has done for us.

I am going to attach a few pictures. I don't know which ones yet, but I am sure you will enjoy them no matter which ones I pick...because she is just so cute!

We love you all and appreciate all the prayers and support that continue to come our way!

All for HIS glory,

Mike
Eph 2:4-7

PS - Dawn got her haircut (see the picture below)

March 29, 2008 - The latest on Emily

Hello all,

I'm sorry it has been so long since we last talked, but I have been a little busy. We are on a schedule and I only really get two hours of free time on any given day. During this time I have to run errands and check email and apply for jobs and everything else that needs to get done.

My daily routine starts at 7:00 am (Earlier if Emily has a 3:00 a.m. screaming fit). I have my quiet time (prayer and Bible study) for an hour and try to take a shower before getting Emily up at 8:30. I change her, play with her for a little while and then get started on working on her oral therapy. We have been introducing tastes to her by dipping her pacifiers in her formula and some peaches. It seems hard to imagine, but she doesn't usually get to taste her formula, seeing it goes directly into her stomach.

At 10:00 it is feeding time and this can usually take up to an hour, depending on how she is feeling. At 11:00 she gets to go to bed and I have my two hours of free time.

At 1:00 the feeding starts again. I let her digest for about an hour before starting her physical therapy exercises. We practice sitting, rolling, lying on her stomach and on her side. We try to stretch her arms and legs and tickle her all over.

By 4:00 it is time to eat...again! Then before you know it its nap time again and I get to start making dinner. Dawn and I have about an hour to ourselves and then another hour or two as a family. Then it is time for bed...9:00 for Emily and around 10:00 for us. Then we get to do it all over again...

Since the last time we talked (or I emailed) Emily has been to the Plastic Surgeon, the Optometrist and the Neurosurgeon. She saw the Plastic Surgeon for the crease in her skull and the birthmark on her shoulder. He didn't want to comment on her skull and sent us to a neurosurgeon to get a better answer, but told us not to worry about her birthmark unless it keeps getting bigger. He plans on removing it when she reaches a year old, but he will do it sooner if it continues to grow. The concern was that it was interfering with the motion of her head and he concluded that she would be fine if we left it alone for now.

The neurosurgeon's appointment was a month later and by the time we went to see him, her skull was healing fine. He actually looked at me strange when I told him why I was there. I thought it was better to be safe than sorry.

The optometrist was interesting. I think to myself, what is he really going to do? She can't tell him if she can see clearly or not. However, I guess he can tell many things by the shape of her eyeballs. He said she is doing fine right now, but if she was a sophomore in high school, she would need glasses. Well, she is not a sophomore in high school, so I got out of that expense for now.

In general, Emily is doing very well health wise. We are having some issues with her feeding again because we had to increase the amount we were giving her. For the past week we have been playing with different amounts and trying to see what works best for her. In the process, she has had some miserable days! The night-time screaming fits have started again and this time they are worse. She will literally scream at the top of her lungs for an hour until she passes the gas. We try everything from patting her back to rubbing her stomach, but nothing really works...we just have to wait it out.

Last night our church hosted a Parents Night Out. It was a fund raising event for the youth and part of our church's effort to build strong families. The youth and some mature adults provided baby-sitting for 4 hours while Dawn and I got to enjoy some freedom! It was open to all parents in the church and the nursery was like a zoo. We feared the worst, but all went well and Emily enjoyed her stay there while we went out for dinner and a trip to the local arcade. I am expecting that in 40 weeks our church is going to experience a baby boom...only time will tell.

All in all, life is good! It isn't easy by any means, but it is good. We serve an awesome God who has been providing for us in many ways. Our Easter Sunday was spent serving the local college kids dinner at the church. In the past (at seminary) I would invite all the people in our building who were not going home to visit family for Easter to our apartment for dinner. This year I decided to carry on the tradition for all the college students in our church. There were even a few families that participated and we had more than 25 people there. If you know me, you know I live for this kind of stuff. I got it from my mom who is always hosting family reunions and throwing large parties.

Next month is filled with a large number of Drs. appointments, but for the next few weeks I can relax a little. Emily is doing great physically and although she is a little behind developmentally, she is starting to make sounds and trying to move around a little more. She has a habit of moving her body into the corner of the crib so that her head is against the bars and she can't get away. She will cry until we come in and move her. I devised a method of tying her to the bed so she can move, but she can't reach the edge of the crib. It sounds mean, but I simply put a string in the end of her sleep sack and only give her a few inches to move. It works and we all can sleep a little longer because of it, so I see it as a good thing.

Well, that's all I've got for now. There is nothing major to report and Emily is doing good. Thank you all again for your prayers and support and I will talk to you all again in about a month. Can you believe Emily is almost 6 months old already...boy, time flies!

We love you all,

Mike

May 1, 2008 - Time goes by so fast!

Hello everyone,

Can you believe that Emily is now 6 months old? Well, actually, it has taken me so long to sit & write this update, that she is going to be 7 months old in about a week. My how the time flies! I know we have not been as diligent about sending updates and we have heard from some of you about that. Well, it has been a little busy here, and some days we are just in survival mode. If all three of us make it through the day that is a good thing! Anyway, enough of my excuses…

Emily is now 14 lbs. 6 oz. and 25 ¾ in. long (maybe more by now since those measurements are from a couple of weeks ago). She is getting long and lanky now. The pediatrician and the nutritionist were very happy with her weight gain. We have not had as many issues with her feeding as we did in the past. The pump is really working out at night, but the goal is to eventually get rid of that. So we have been increasing her day time feeds. We have to do this very gradually to give her time to adjust, but so far she is up to 4 oz. 3 times a day & then her nighttime feed (which is still the majority of what she eats all day). Mike has also started working with (somewhat) solid foods: rice cereal & applesauce, bananas, peaches & even carrots, which were NOT a big hit. Truth be told, she tends to wear more than she eats, but there is progress. The fact that she will take anything by mouth is a HUGE step.

Along those same lines, she is loving her pacifier these days. Sometimes she just likes to chew on it rather than suck on it (OK most of the time), but it has been great to see her interested. For so long she wanted nothing to do with the pacifier. She doesn’t quite know how to hold in her mouth, so you have to hold it for her, but one step at a time. She has also started finding her hands to chew on – it seems more accidental than anything, but she is pretty good about chomping down when she can. Of course she will also do that to our hands or the couch cushion or just about anything else that gets near her. We are pretty sure she is teething these days. She has definitely been drooling up a storm! We have tons of wet bibs, burp cloths & outfits to prove it! And there have been many days when she has just been a joy to be around (insert sarcastic smirk here). It has actually been very stressful for all of us because she has been pretty MISERABLE. She has had some lengthy crying fits where she is inconsolable, so it has been difficult at times.

She is definitely revealing more & more of her personality. And she is quite feisty! She lets you know when she doesn’t want to do something (like tummy time, but more about that later…). She has started to vocalize a little bit. Sometimes she just likes to hear herself make noise and sometimes she wants to let you know something (I don’t want to be in this chair anymore, I am ready to get out of bed, etc.). She has laughed quite a few times (usually when Mike is tickling her). And by the way, she is pretty funny when she has been tickled. Her arms and legs go straight up in the air & are stiff as a board – it is pretty comical. Well anyway, her laugh isn’t a hearty laugh, just little noises. She really only makes one sound: aaaah. That is the noise she makes when she laughs, when she is just trying to be heard & when she is about to cry. So needless to say it can be a little tricky to decipher what she wants/needs.

She cannot roll over, but manages to move herself around the crib or on the floor. She basically “walks” with her bum (and her feet too). I secretly believe that she is practicing for visits to the dentist that will come later in life – you know what I mean, I am sure you have walked with your bum when they come at you with that sharp metal pick! She manages to spin herself around on the floor so her head ends up where her feet used to be & vice versa. This little trick is also what gets her wedged into odd spots in the crib. She seems to only be able to do this in one direction because she pushes with her feet. So once her head is against the bars of the crib, she cannot go in the opposite direction & get herself out. At times, we get her up after a nap & she has stripes across her forehead from the crib bars (She really doesn’t seem to like her head pressing against wooden bars, go figure – that would be one of those times when she “vocalizes” loudly).

She is making some progress with holding her head up. When she gets tired her head lunges forward rather quickly so we have to be careful. I have gotten used to turning my face so her head hits my cheek. That way she doesn’t get hurt & I don’t get a fat lip. She doesn’t quite have a handle on sitting up on her own. First, her head gets pretty heavy. Second, her body is pretty stiff and rigid so it is a struggle to keep her legs bent. Mike does exercises with her every day & he is great at it! He finds new and interesting ways for her to do her tummy time without her even realizing she is doing it (she HATES being on her tummy). But his creativity has helped her to make some great strides with lifting her head & building up those muscles. The physical therapist also comes once a week now, so she checks on Emily & gives Mike new exercises to do. They work on getting Emily to roll over, to hold up her head, to bear some weight on her hands or feet and to stretch her muscles.

Emily also had an appointment with the neurologist this month. He was hoping to take her off Phenobarbital (her seizure med) because it has a sedative in it & can hinder her learning. But first, he wanted to do an EEG to check the seizure activity in her brain. She had the EEG Tuesday & the doctor said she does still have seizure activity. So he recommended switching her meds to one that does not sedate her, it is called Keppra. She has actually taken it before in the NICU. So for the next few weeks she will be weaned off Phenobarbital & started on Keppra. My only concern with this medicine is that in the NICU we were told that it could make her irritable. One of the issues with the damage to her brain is it can make her irritable so this medication may add to that – we aren’t sure. She has been pretty fun to live with lately, granted most of that is due to her teething, but it still makes me a little concerned. Hopefully she will do well with this transition.

One other thing that the neurologist recommended is that we go to an occupational therapist. He is hoping that the therapist will put her on a medication that will relax her muscles. As I already mentioned she is pretty stiff and rigid. This is due to her Cerebral Palsy – it is called spasticity & it means that she has increased tone in her muscles. Now that may sound good since we all want toned muscles, but for her it means that her body is too stiff. Her muscles do not have the stretch & flexibility that is needed for a lot of natural movements that we take for granted everyday. So he is hoping that a medication that will relax her muscles will help with her exercises. When we mentioned this medication to her speech therapist & physical therapist they were both very excited & said they have seen many kids make great improvements once they are on the proper meds. So we will see what happens. That appointment isn’t until June, though.

In the meantime, we will continue with our usual routine. Emily has speech therapy & physical therapy once a week now. And she sees the nutritionist once a month. She no longer sees the therapist from VIPS (Visually Impaired Preschool Services). We decided that we wanted to give the physical therapist more visits & we aren’t as concerned about her vision at this point. She will continue to have regular checkups with the ophthalmologist so we know that he will keep watch for anything odd. Her eyes are healthy & she has gotten much better about following objects (and people) or turning in the direction of a noise, so it isn’t a major concern for right now. She makes strides each week & we are so thankful. Mike has been a GREAT stay-at-home dad. He is very diligent about doing her exercises & finds new and creative ways to work them into her normal daily routine.

And as stressful as things have been around here, there have been many highlights. One of them is that Mike and I will be able to get out once a month. One of the ladies at our church knows how stubborn & thickheaded we can be & that we won’t ask for help, so she took it upon herself to organize an outing for us once a month. So a couple of ladies will come by to watch Emily for a few hours while Mike and I get some time to ourselves. I CANNOT tell you what a blessing this is! We are so thankful to have a church family that is willing to help us out (even when we are too stubborn to ask ). And another highlight is that for the past week Emily has slept through the night EVERY NIGHT. Wooo hoooo! This is very exciting! Plus she has been a lot better the past few days too. Maybe her teeth aren’t hurting her as much or maybe she has just gotten used to the new feeling. Either way we are thrilled to have our happy cheery girl back.

Well I think I have rambled on way too long. Since we have not sent updates in a while, I had to a lot to report. Sorry about that. I would say that we will send updates more often, but I won’t make any promises. We take each day as it comes. But I do hope that this email finds you doing well. And I hope spring is blooming in your neck of the woods. It is a wonderful reminder that God is the giver of life & He does it beautifully!

In HIS Strength,

Dawn

June 2, 2008 - Our little girl is all grown up

Hello y'all

Our little girl is growing up so fast! Emily will be 8 months old next week!

In our last update, Dawn mentioned that we were taking Emily off the Phenobarbital (seizure medication) and putting her on Keppra. We now have a new baby girl. They told us that the Phenobarbital numbs her brain, but we had no idea how much since she has been on it her whole life. It took three weeks to wean her off it completely, but in the first week there was a significant difference in her demeanor. She became more alert and began to smile a lot more. We didn’t notice the changes immediately, but the therapists mentioned it and we recognized it then. We are pleased to say that she is much more aware of her surroundings and is a joy to be around most of the time; although she still has her moments.

We are continuing to meet with the Speech Therapist and the Physical Therapist three times a month. I have been feeding her bottled food for some time now and I have mastered getting her to eat…when she wants to eat! There are days when it doesn’t matter what you do, she will not swallow. You can put as much food in her mouth as will fit, but it will all come right back out. I have come to the conclusion that she is obsessed with apples. They are the only thing that she will eat. I will start out with pears or squash and she will spit is back out, then I will go to apples and she eats it all. I was told to mix the apples with other things and then she will eat it but that is assuming she is ignorant and can't tell the difference. I have a genius for a child and she knows the difference! It doesn’t work. So I stocked up on apple sauce and will continue to try everything and see what will work.

Our goal is to get her to eat more food and give her less in the tube. Another goal is to increase the amount of food she eats during the day so that we can eliminate her night-time feeding. I have consulted some mothers to see what a normal child would eat and Emily is way behind. We have slowly increased her feedings to 4 ounces three times a day. When I increase a feeding just a little bit, she has dry heaves and reacts badly. I have been experimenting on her for the last few weeks to try to figure out what works with her and how to increase the food, but nothing has been successful yet. We have come to a stand still. Even today, she reacted badly with the 4 ounces. So for now, it is status quo until she can handle a little bit more. It has been a long slow process and I think it is going to be a lot longer before we can eliminate the night-time feeding.

I had the physical therapist make me a list of exercises that I should be doing with Emily on a daily basis and I have been doing what I can throughout the day. If I were to do them all, we wouldn’t get anything else done. We are doing stretching exercises for most of her muscles and trying to get her head and arms strengthened. She can only hold her head up for a short period of time. The funny thing is that she can hold her head up longer when she is on her tummy than she can if she is sitting up. I guess all the “tummy time” has paid off. Because she is unable to hold her head up for any length of time, she is unable to sit up on her own without the help of her special chair.

I don’t remember if we have ever mentioned the special chair, but as part of the First Steps program, we are entitled to some great benefits. We were able to borrow a special chair as well as a wide variety of exercise equipment that our physical therapist likes to bring. We were even able to get two chairs so we can leave one at church and not have to lug it back and forth. We have an exercise ball, a vibrating pillow (which Emily loves), and many other items that I use during her exercise time.

Dawn mentioned in our last email that we are seeing an orthopedic doctor in June to get Emily on a medication that will help relax her muscles. I have this appointment next Monday. This medication will help her relax so that her arms are not always stretched out and her feet are not always flexed. As I mentioned in some of my previous emails, she has trouble controlling her hands because it is hard for her to bend her elbows. When she is totally relaxed, she can put her hand in her mouth, but if she gets startled or she bites her hand too hard, her arms straighten out and she can't bring her hand back until she relaxes again.

We have some good news! We have decided to get into the 21st century! I have started a blog and it is my hope to update it every week. I am new to this blogging thing and I hope to get it looking better as time goes by. If you are unfamiliar with blogs, which some of you probably are, click on this link and it will take you there, then right click on your mouse and add it to your favorites. If you do this, you won't have to remember what the web address is.

If you know Dawn and me, you know that for the past five years we have been willing to go wherever God leads us. When we were being called to Kentucky, we knew this was just the first place He would bring us. We don’t know where we will be going next (most likely NOT RI), but wherever it is, we are ready, willing and able to go. We (I mostly) thought by this time, we would be overseas serving as missionaries in some city that we had never heard of before and where they are in need of the gospel. God had other plans and we are still here in KY seeking where He will have us go next. All this is to explain why we have named the blog “Wherever He Leads We’ll Go.”

In order to get everybody on the same page, I have also put together another blog that has all our emails going back to when Emily was first born (this blog). A word of warning if you are planning on visiting this site…it is long!

I am sure there are things that I have missed, but the benefit of having the blog is that I can update it every day if I want to and you are not getting bombarded with emails from me. It is now your responsibility to keep up on the latest Emily news and pics.

Please leave comments on the blog and/or send us emails to let us know what is going on in your lives!

All for HIS glory,

Mike