November 19, 2007 - Homeward Bound!

Hello y'all,

Today was a banner day in our household! Emily Rose is finally home! We can not begin to express our joy! I didn't believe it was going to happen until we finally had her in the car and we were driving away. I didn't want to get my hopes up too high because they have been shot down so many times before. She is asleep right now and has been a little fussy at times, but nothing we can't handle.

Only time will tell how well she does with sleeping tonight. The nurses told us that the other night she woke up around 4:00 am and began fussing. They turned on the TV to VH1 (certainly not our first choice!) and she quieted down...until it came to a commercial; then she cried until the music came on again. I guess she likes her music. At least from now on Dawn and I can monitor the kind of music she listens to. It's only Christian music with a dash of country once in a while; but no Toby Keith.

We realize that many of you will want to come and see little Emily, but we ask that you follow a few rules that Dawn and I have agreed upon. First and foremost, please don't drop by unannounced. We prefer you call and set up a time that works for us. She has a lot of doctor’s appointments, so we may not even be home. We also want to schedule your time when she will be most alert and not interfering with her sleeping schedule...although she can sleep through a train wreck.

Second, we ask that you refrain from bringing your children (12 and under) with you for a visit. Because of her surgery and the medications that she is on, her immune system is not fully developed and we want to keep her as healthy as possible for as long as we can. This also refers to you, as the visitor. If you are experiencing cold symptoms, please hold off your visits until you are feeling better.

On a different note...God has poured His blessings upon us in the past month through our friends and family, and Dawn and I want to give back. What we have decided to do is purchase hooded sweatshirts for the homeless in downtown Louisville. So, if you were planning on buying something for Dawn, me or even Emily this Christmas we ask that you refrain! Emily has enough outfits in various sizes to last us until late spring, so resist the desire to buy her more. She doesn't need any more toys, stuffed animals or things that squeak. What we ask that you do instead, is make a donation to a charity in her name; you could send us a check and we will put it towards a sweatshirt, or you could give to another cause of your choice. If you desire, you could mail us a sweatshirt that you don't wear any more and we will add it to our collection. My goal is to give away between 50 and 100 hooded sweatshirts.

Again, we want to thank you all for the outpouring of love, prayers and support. Our cup overfloweth! Not a day goes by that we don't get a card or package in the mail and we know it is God providing for our every need.

We love you all and covet your continued prayers as we begin to find out what it is really like being a full time parent.

All for His glory,

Mike
Eph 2:4-7

PS Enjoy the picture of Emily on her first day at home.

November 26, 2007 - Our First Week

Hello all,

As I always do, I would like to first say that we thank you all for your continued prayers and blessings that continue to come in. God has provided for our every need and our cup is overflowing with blessings from above. We give God the glory for every good thing that we receive because we know that it ultimately came from Him.

Our week started off very quiet and uneventful. I took the beginning part of the week off from work so that Dawn and I could get adjusted to our new lifestyle. We got our first real taste of parenthood and enjoyed the fact that we were finally in control of how Emily was being treated. Our biggest frustration with the hospital was the fact that she had a different nurse every day. Each nurse had a different way of doing things and Emily didn't always like the way she was treated.

It took us a few days to figure things out and get Emily adjusted to the way we do things. Our biggest problem was and still is the fact that she doesn't sleep during the day. She wakes up at 6:00 for her feeding and can stay up until 4:00 in the afternoon sometimes. We are trying to break her of this habit, but it may take some time.

Thanksgiving was a wonderful day! First and foremost, we were thankful that we got to spend the day with our new daughter. A few ladies from our church made us a turkey dinner and all the fixin's, and Dawn and Emily and I enjoyed our day watching the parade and It's a Wonderful Life. We have seen the movie a hundred times, but this year it hit home a lot more. At the end, when the whole community comes to the rescue of George Bailey by showering him with love and gifts...that's how we have felt for the past month. You never know how much you are loved and appreciated until you have a tragedy in your life and you find out how many people really love you and care for you. We are truly blessed!

I decided to go back to work on Friday and that's when things took a turn for the worst. I came home for lunch (I work a mile down the road) and everything was fine, although Dawn still had not had time to take a shower. I ate and went back to work. About 2:30, I got a call from Dawn to come home now! The feeding tube came out of Emily's chest! When we left the NICU, the nurse told us not to panic if this happened because most likely it would; but who can help panicking when you know that your baby has a hole in her chest and now you have to go to the emergency room to have the tube put back in.

I rushed home, packed up Emily and Dawn and sped to the Children's Hospital. The funny thing is that Emily was more calm than Dawn and I. She cried a little, but I think Dawn was crying more. After waiting about an hour, we were finally seen by a doctor. He tried to put a tube in and couldn't get it in the hole because it had closed up. This is not what we wanted to hear! Emily didn't want to hear that either!

A little blurb about the feeding tube. There are three different tubes she can get. The first is a dark yellow tube that you may have seen if you have ever given blood. They tie a tube around your arm to stop the flow of blood so they can find a vein. This is what the tube looked like that she had in her. At the end of the tube was an expandable tip to keep it in the body; but it is made of rubber, so it comes out easily. The next tube, which is what she has now, is a clear plastic and has a balloon on the end. The doctor inserts the tube and then fills the balloon with a little water to keep it in place. The tube comes out of the chest, just below the rib cage, (just like the first one) but this one has a rubber washer on the outside of the chest to hold it in place. So the balloon keeps it from coming out and the washer keeps it from going in. The third and final tube is a button. This tube will lay flat to the skin and will pop open when it is time to feed her. This is the thing that will be put on when the hole completely heals. Think of it like an earring. If you take the earring out too early, the hole will close up, but once it heals, you can go a few days without an earring and it won't close on you. We are waiting for it to completely heal!

Back to the story...because the tube wouldn't go in, the doctor decided to sedate her and reopen the hole. In order to sedate her, they had to put an IV in to give her the drugs and to test her blood. It took three nurses and six tries before they got a successful IV. They tried her two hands, her two arms (one arm twice) and finally had to put it in her foot. Every time they tried, they had to hold her down and listen to her scream until they finished. This was a long and exhausting hour and a half!

With the IV in and the drugs flowing, they were able to expand her hole. They did this by inserting metal rods into the hole. A small one, then a bigger one, and a bigger one, until they got their desired width. It was a good thing that she was out cold for this. It was hard to watch!

They put the tube in and blew up the balloon and showed us how to take care of it. She was then taken to have x-rays to make sure it was in the right place...then more x-rays 20 minutes later and then we fed her to make sure it worked. Six hours later, we left the emergency room physically and emotionally exhausted!

Saturday was another tough day. With the first tube, it was easy for Emily to push out the food. If she was experiencing gas, she would tighten up her stomach and she could burp through the tube. This new tube is not as easy; she has to work to push out and the first day of feeding, she couldn't do it. So, after every feeding she had an upset stomach and would cry uncontrollably for an hour or two. Needless to say, we were discouraged and not too excited about this new tube.

Sunday took a turn for the better. She learned how to push out with the new tube, so gas was less of an issue. She was more calm after feeding and was actually a joy to be around again. We think we are past the worst of it and the future looks bright. We know that at every turn, there are going to be trials that will test our faith and our patience, but we serve a mighty God who is in control of all things and He will not give us more than we can handle.

Today, Dawn spent the day alone with Emily and did a great job!

I feel like I have so much more to say, but I am experiencing writers block. I will give you another update later in the week to add all that I may have wanted to say, but didn't have the words for it tonight.

We love you all,

Mike
Eph 2:4-7

December 8, 2007 - Emily

Hello everyone,

Here is the latest on little Emily Rose:

She had an appointment with the neonatologist this week. At this appointment, we met with a doctor and an occupational therapist. Aside from a basic physical, they did an hour long evaluation of Emily to determine what kind of therapy she will need now that she has left the NICU. They checked her vision & hearing and her motor skills, muscle tone & strength. They also asked me about any concerns that I had. Based on all of that, they send a referral to First Steps. It is a wonderful program! Basically the therapists will come to our home to work with us. They will teach us exercises that we can do with Emily on our own.

Our main concern with Emily has been her eating. Not only does she avoid the bottle like the plague, but she has a very hard time at every feeding through her tube. We feed her every 4 hours and it is not a fun experience for any of us. If she is awake during her feeding she is usually crying (OK, really screaming) and wiggling around making it very difficult for the formula to go down. And if she sleeps through the feeding, she will wake up screaming. Most of the time, her crying spells will last for about an hour, either during her feeding or after. We think she is in pain from gas. Since her surgery, she cannot burp, so she has to “burp” through the feeding tube. With the original feeding tube she had, she seemed to be able to do this pretty easily. Since that tube came out & they put in a new one, she has a very hard time burping. It is awful to know that our daughter is in pain and we cannot do anything to help.

The end result of the evaluation with the neonatologist & therapist is this: we will be working with a nutritionist, a speech therapist, a physical therapist and a group called Visually Impaired Preschoolers (VIPS). The nutritionist and speech therapist will work with us on the eating/feeding problems. Emily needs physical therapy because her muscle tone and strength are not what they should be. One side of her body is stiffer than the other & does not move as well. She also turns her head to one side and this has caused some stiffness in her neck muscles (this affects her ability to lift her head too). And her vision seems to be impaired too. They said that her vision itself seems OK, but it seems that her brain does not “register” what she is looking at. VIPS will come to our house to do their own evaluation and then work out a plan based on what they find.

The interesting thing about her vision is this – we went to the ophthalmologist afterwards and he said the same thing after only spending about 5 minutes with Emily. He said it is not uncommon in babies her age for the brain and eye to be out of sync. She may grow out of it or she could have vision problems for the next 95 years (his words, not mine). As with many other things in Emily’s life, we will have to wait and see. I have to be honest, I am not really sure how they know that her brain is not picking up on what she is looking at, but they both said the same thing without knowing what the other thought. Her vision problems were a shock to us. Mike and I had no reason to think there were any problems there. She watches the bears on her mobile go around, she will look at us, stare at the TV or the ceiling fan in the living room. We just didn’t think there was any issue other than the fact that her eyes will go back and forth really fast at times (which was the reason for the appointment with the ophthalmologist in the first place).

These appointments can be a little tough to take. The doctors are painfully honest. At the neonatologist, I was told Emily will have some pretty significant challenges, but they want to help her to do as much as she can (from the tone of this statement, the doctor doesn’t think that will be very much). For me, accepting the fact that my daughter has cerebral palsy has been a process. I take in a bit at a time. And I think there are times when I am in denial. When I see her at home doing things that I think any other baby would be doing, it is very easy for me to put it out of my mind. So hearing such brutal honesty can be like a punch in the stomach. On one hand, I need to keep a realistic view of what Emily’s life will be with her diagnosis, but on the other hand I don’t want to set limits for her. And I certainly don’t want to set limits on God. I don’t know what He has planned for Emily. I just know that I am going to love Emily and do everything that I can to help her to reach her potential (whatever that may be).

God has already used Emily to touch many people and I am so thankful. I know that Mike and I learn something new every day. We are learning to appreciate the abilities that we take for granted (walking, talking, seeing, etc.). We are learning about the sacrificial love of parenting - for 2 selfish people this is a tough lesson to learn! As we approach Christmas, I have been thinking about the sacrificial love of God. He selflessly sent His only son to earth, not to be remembered as the cute little baby lying in a manger, but to be remembered as the perfect man who died on the cross for the sins of man. What an amazing thought! I cannot stand to see my daughter cry in pain because of gas, but God was willing watch His son endure torture on behalf of His children. What an incredible God we serve. He knew our greatest need was a Savior and He gave His own son to meet that need. So as you shop for Christmas gifts for family & friends, I hope that you will remember THE GIFT that was given to meet your greatest need.

In HIS strength,

Dawn

December 26, 2007 - Christmas Update

Hello all,

I know that it has been a while since we have sent out an update, but there has not been much change with Emily and we have been a little busy.

First, I would like to mention that Emily got her feeding tube changed to the button last week. I would like to say that things with her feedings have changed, but the change is small. She has the ability to push gas out a lot easier, but she is still having trouble with gas. It takes about 45 minutes to an hour to feed her and she is crying for the better part of it. With the button, it is easier for her to push out the food, so when she cries, everything that she has just eaten, comes right back out. It gets a little frustrating!

We are supposed to meet with a nutritionist, but with the holiday season, everything is being delayed more than we would like. We feel that if we changed her formula or something about the way she eats, she would be better off, but we won't know what to do until we meet with her.

Other than feeding time, she is a joy to be around. She is a happy baby and is content to lie on the floor and stare at the ceiling for hours. She loves the ceiling fan and will continue to keep her eyes fixed on it even while you are moving her around. She doesn't like to sleep when things are going on around her, so putting her in her crib is the best way to get her to sleep. Even then, she sometimes lies in bed and stares at the mobile or the wall.

A few weeks ago, my parents and sister came in for a visit. It was an enjoyable visit! They all got to spend some quality time holding Emily and giving Dawn and I a break from the routine. We even got to go out for dinner, which was very nice. I would say that Emily was on her best behavior for them, but they got to see her at her worst also. If you spend enough time with her, you get to see the good and the bad. Again, it is mostly around feeding time when she is at her worst...then again, there is bath time also!

We had a very relaxing Christmas. We didn't go to Rhode Island as we usually do, for obvious reasons. We started a new tradition with Emily. We read the first two chapters of Luke as a family and focused on the true meaning of Christmas. Although we know she didn't understand, we explained to her (As we will every year) why we celebrate Christmas and how God gave her the best gift she will ever receive when He sent His Son in the form of a baby in a manger. The story does not stop there, but continues to the cross at Easter, which will be one of our next traditions. Most of the day was spent relaxing and watching TV. We are huge LOST fans and we bought the third season on DVD and have been watching it over the past week. We are looking forward to the new season which starts at the end of January...

Speaking of January, can you believe that it is almost a new year again? It was this time last year that Dawn and I were discussing our going into the mission field for two years. We would be there right now if Dawn had not gotten pregnant. It is amazing how things can change so quickly. Dawn will be going back to work in a few weeks and I will be a stay at home dad. This will be the temporary situation until I can find the job that God is preparing for me. We would love to stay here in Shepherdsville, but we are willing and able to go wherever He leads us.

Dawn is not really looking forward to going back to work, as you can imagine. The hardest part will be working from home and having me and Emily in the next room. If Emily is crying, Dawn's motherly instincts will kick in and she will want to intervene. I am fine listening to her cry much longer than Dawn is; especially when putting her to bed.

As I prepare to depart, I would like to thank all of those who have contributed to the "Hoodies for the Homeless" as it was called. I was able to gather and purchase 67 hooded sweatshirts and I will be delivering them to the homeless shelter by the end of the week. I reached my goal and it was only through the help of a multitude of people. I appreciate all you did and I am sure that the people who receive them will appreciate the gift also; as well as the warmth it provides.

I hope you all had a great Christmas and are preparing for a joyful new year. Feel free to reply and let us know how your Christmas was.

We love you all and appreciate all your continued prayers and support.

Mike
Eph 2:4-7

January 2, 2008 - 2007: What a year!

Hello all,

As we begin a new year, I have taken some time to reflect on the past year. Bear with me as I do some reminiscing… At the start of January 2007, Mike and I thought we had our year planned out. He was about to begin his last semester of seminary. We were going to apply to the International Mission Board in May and by December we would leave for a 2-3 year assignment abroad. Little did we know that God had something else in store for us.

On 1/31, we found out that I was pregnant. After 3 ½ years trying to conceive, we had just about given up. Needless to say, it took a few days for the shock to wear off for both of us. We thanked God for the way that He would knit this child together in my womb. And we quickly began dreaming about who he/she would be. Who would he/she resemble? Would this child be smart, funny, athletic and more importantly would they grow to know and love God? Would we be good parents? We trusted that God knew what kind of life he/she would lead and that He would equip us to be the parents that we needed to be.

Well, the pregnancy had very few complications (unless you count the first trimester when I spent much of my time hugging the bowl or my misery during the HOTTEST summer ever in Kentucky history - at least it felt that way to me!). When we thought about how each part of our child was being formed in the womb, we could not help but praise God, the Creator of all things. God is so incredible! He designs each one of us personally as if we are clay in His hands. He cares about each and every one of us right down to the number of hairs on our heads. I am not sure why he cares how much hair is on my head, but I am thankful that He cares enough about me to consider every last detail. As my belly grew, we anxiously awaited the day that we would get to meet our daughter (we didn’t know what we were having, but Mike and I suspected all along that it would be a girl).

Along the way, we certainly had our share of fears. We both were terrified at the thought of parenthood. We knew it would be the toughest job that would ever come our way. And the idea of actually giving birth would keep me up at night (OK it really was the huge stomach and the inability to find a comfortable position, but still it was a scary prospect). We clung to the promise that God would not give us more than we could handle. And we knew that no matter what happened, He would be with us.

I can still remember waking Mike at midnight to tell him "it was time". He stared at me as if I was trying to be funny and doing a terrible job. I woke up at 11 wondering if my water had broken & had already talked to the doctor. So I convinced him that I was serious and we really did need to go to the hospital. Thus began the 21 hour wait for Emily's arrival. I will admit that when she finally arrived, I was a bit dazed and definitely exhausted. When they told us that she was not breathing, I think I stopped breathing too. It felt like an eternity had passed before they got her breathing and put her in my arms. I only got to hold her for about 5 minutes before they took her to the nursery to keep an eye on her. At that point, I was given some heavy duty drugs and the rest of that night was a blur.

The next morning, the nurse came to take me to the nursery to see my baby girl. I was excited and I remember chatting with the nurse and Mike as I tried to make my way to the wheel chair. The next thing I remember I woke up in bed with a lot of people staring at me. Apparently I had fainted! So Mike went by himself to see her while I rested and had some breakfast (just about the first thing I had eaten in 36 hours!). Not long after Mike came back from visiting her in the nursery, we were told that Emily was going to be taken to a children's hospital. She had some seizures overnight and wanted to get her to a hospital that was better equipped to handle anything else that might come up. On her way out, they took her by my room. So I got to spend about 5 more minutes with her before she was taken across town.

This began a six week journey in the NICU. This was certainly not the experience I had expected for the birth of our first child. When I had fears about labor I worried about the pain I would experience and the possibility of a c-section, but never imagined that my little girl would have such problems. But this was the journey that God had chosen for us long before I ever got pregnant. He was not surprised when Emily was not breathing at birth. He knew that she would spend 6 weeks in the NICU and that she would be diagnosed with cerebral palsy. He also knows exactly what she will turn out to be.

As we have adjusted to parenthood and Emily's diagnosis, our dreams for her have changed a bit. It is not that we don't expect great things for her, because we certainly do. The thing that has changed for us is that we will more thankful for everything that she will be able to do. We now dream of feeding her without pain and discomfort and then one day feeding her by mouth so she can let us know what tastes are her favorites. We dream of hearing her talk and one day saying “Mom” or “Dad” or “I love you”. And we dream of seeing her walk. We are not sure if she will ever be able to do these things; so if/when they happen, we will be especially thankful!

Every day we thank God for blessing us with a beautiful little girl; for counting us worthy to be her parents; and for giving us strength to get through each challenge. He certainly did not give us an easy road to travel (not that parenthood is EVER an easy road), but He has been with us through so many trials in the past and we know that He will be with us for every challenge in our future. We are excited to see what He has planned for Emily’s life. We are anxious to see what kinds of challenges she will overcome and the lives that she will touch.

This year we have gotten some mixed reviews from doctors. Our meeting with the neonatologist made us feel like she would not accomplish very much in her life. They evaluated her skills in the following areas: cognitive, communication, motor, social-emotional and adaptive development and rated her below average in every one. We met with a therapist who works with visually impaired children and she was very impressed with Emily. She said that she did not expect much based on the report that she read (written by the neonatologist’s office). Then we met with a neurologist and he told us about how her brain can “re-wire” to compensate for the damage that has been done. So he is optimistic about what she will be able to do. The bottom line is the doctors CANNOT predict the future. They have no idea what she will or will not do. God has already determined what Emily’s future will hold and we trust in Him not the “words of wisdom” from well-meaning doctors. Luckily Emily has no idea that some have set limits on her already. As she grows and develops, Mike and I will encourage her to work hard and push herself to reach her highest potential. We will teach her about God, who loves her and created her in His image. We will let her know that with Him there are no limits to what she can achieve.

So this year we have been blessed beyond measure. We have a beautiful baby girl who brings us joy each and every day. We have loving families who have offered support in so many ways. We have great friends who have prayed for us, cried with us and laughed with us. And we have an incredible church family that has shown us love in countless ways. The year did not turn out the way we planned - it was so much better! We cannot wait to see what God has planned for us in 2008.

In HIS Strength,
Dawn

PS - Enjoy a couple photos of Emily. We have been trying to catch some of her funny faces on film!

January 23, 2008 - The Latest News

Hello y'all,

I know that it has been some time since you last heard from me and I'm sorry. There have been many developments in the past month; I don't know where to begin.

Emily is now three months old and we finally have a team of people working for her best interest. We have met with a Physical Therapist, a Nutritionist, and a Speech Therapist. We have a meeting next Tuesday to discuss what her daily routine is going to look like and each one of them have given us something to work on in the mean time.

The major problem Emily has had since she came home from the hospital has been her feeding. We have been struggling with the bureaucracy, trying to get the nutritionist here as soon as possible. We met with her today and we finally have a game plan to help her with her feeding. She agrees with us that the problem is more than the food that she is eating. She has suggested, and we have agreed, that she needs a second opinion about her digestive track. We have changed her food two times in the last week and there has been a difference in her bowel movements, but not in her pain during the feedings. We will be making an appointment to see a specialist sometime this week. This requires a trip to the Cincinnati Children's Hospital in Ohio (about 2 hours away) but if it gets us the help we need, it will be worth it.

For now, the nutritionist has given us a prescription for a feeding pump which will allow us to feed her over a longer period of time. We will be able to put her to bed at 11:00 pm and she will get the equivalent of three feedings through the course of the night, ending at 9:00 am. Because she will be getting the food over a longer time, it will give her body the time it needs to digest it at a steady pace instead of getting a stomach full at once. We will also be able to give her less food at the other three feedings, making her stomach less full and thus less irritable.

God willing, we will receive the pump tomorrow and can begin this process tomorrow evening. I can't begin to tell you how excited I am that I won't have to get up at 1:00 to feed her. Most of the time she is more awake for this feeding than I am! Dawn won't even have to get up to do the 5:00 am feeding, so she is excited also.

Things are getting better, albeit very slowly.

Last week we had our three month appointment with the pediatrician. I basically bombarded the doctor with questions. Having seen the Physical Therapist and the Speech Therapist in the mean time, they asked me questions that I could not answer and she was the one who could tell me all the answers.

Emily has a large bump on her head where two of the bones meet and there is a fear that they are not growing together correctly. As with everything else, it may be too early to tell, but if there is something wrong, we need to be proactive about it. So, we can add one more doctor to our long list of doctor appointments. This one is a Plastic Surgeon! She is three months old and is considering plastic surgery. She is going to be one beautiful baby! On a similar note, she has a birth mark on her neck that seems to be getting bigger. It looks like a bruise that keeps on growing. The doctor said that they usually get bigger before they get smaller, but because it is on her neck, it may be interfering with her head movement. This is another case for the plastic surgeon. Since we are already going for the head, we will have him look at this also. Our appointment is on February 21st, so we won't know anything till then.

So...Dawn and I are glad that things seem to be coming together, but as always, only time will tell how things are really going to progress. She still isn't taking any food from a bottle, but we are working on it and by the grace of God, she will gradually improve in this area. One good thing is that because all her food is taken through the tube, her formula can be paid for by the insurance company. I don't know the reason, but at $7 a day, I will take the savings. As it is, we are getting bills from doctors almost daily. For such a little woman, she sure gets expensive.

I guess that is all for now. I am sure there is something that I forgot, but I have given you plenty to pray for. Our biggest concern now will be meeting with a doctor in Cincinnati and seeing what they can discover about her. Our hope is they can come to some conclusion about what the REAL problem is.

Thank you for all your continued prayers and support. There is no way we can thank you all for the love and prayers that seem to be continually coming our way. God is good and we know that Emily is going to have the best life she can because we are continually being blessed in so many different ways.

All for HIS glory,

Mike
Eph 2:4-7

January 31, 2008 - A very hectic week!

Hello all,

This has been one crazy week!

For those who heard that there was a tornado in Louisville, not to worry, we are no longer in Louisville. The brunt of it hit 20 miles away. It hit Tuesday night and last night there were still 15,000 people who did not have electricity.

Our crazy week actually started more than a week ago on Saturday the 19th. Dawn woke up with a sore back and as the day went on it got worse. Needless to say, we didn’t do too much that day, but worse than that, by Sunday she couldn’t move. She spent the weekend relaxing and taking it easy and by the end of Sunday she was feeling a little better. It went away in another day or two and she is doing much better now. This was just the beginning of our eventful week.

On Tuesday we finally had our long awaited appointment with the nutritionist and things went well. I had arranged it so that I would be feeding Emily at the time she came. It was a great plan and she was able to see that at the beginning of the feeding, Emily began to fuss and this continued throughout the feeding. She was able to come up with some solutions to try and put things in the works for us to get a pump that will feed her slowly and gradually through the night instead of getting three feedings with several ounces at once. We are to give her a greater amount of food during the night and we can give her smaller portions during the day, making it easier to digest.

It seems that whenever we change something in Emily’s diet, she improves for a day, and then it gets worse again. The pump was no exception. But I will get back to that in a minute because we didn’t get the pump until Saturday.

On Thursday, I fed her at 9:00 am as usual and everything went well. I put her on her tummy for “Tummy time” and she actually stayed there for quite a while before she got uncomfortable. The real problem didn’t occur until it was time for the 1:00 pm feeding. I got her food ready and went to insert the tube when I realized it wasn’t there. At first this confused me before I realized it had fallen out. For the past week I had been saying that I needed to check the level of fluid in the balloon that holds it in place, but I never got to it. Well, as you probably guessed by now, the balloon shrunk enough that it was not able to stay in for tummy time.

It must have fallen out closer to 10:00 than 1:00 because I couldn’t see the hole that the tube goes into because it had closed over. This automatically meant a trip to the Emergency Room. I won’t go into all the details of the ER because I could write a book on that one day! I will just say that the last time we were there they spent an hour and a half trying to get an IV in, and Emily did not enjoy it AT ALL. I told them when I got there that she was NOT getting an IV under any circumstance and after three and a half hours of waiting they informed me the surgeon would not be out for another hour and Emily would need an IV so she didn’t dehydrate. I lost it and fought hard for my little girl. I won and after a total of 4.5 hours we left the hospital vowing never to return for a G-tube replacement. I watched closely so I could do it next time it falls out.

It was a very long and stressful day and I was looking forward to a good nights sleep. What I didn’t realize is that I was going to wake up in at 4:30 in the morning doubled over in pain. I got up to go to the bathroom and when I got back into bed, I couldn’t lie down. Dawn was asking me what was wrong, but I was in so much pain that I couldn’t reply. Not long after that, I ran to the bathroom and tossed my cookies; as I did three more times in the next fifteen minutes. Needless to say, we went to the ER and got me some serious drugs as quickly as we could. I had a kidney stone! If you have never had one…trust me, you don’t want one. If you have had one, you know what I mean. So I pretty much spent Friday in bed, although I did have to run some errands in the afternoon. I was told in the ER that the stone had moved past the painful point and it should remove itself within a day or so. I will just say that it did pass and the drugs worked wonders!

Saturday was a new day and it started off with a men’s breakfast at my church that I was running. It was planned for my Sunday school class and there were a total of six of us there. As usual, I made too much food. I blame my mom for that. She taught me it is better to have too much than not enough. After our meal, we had a good chat and I look forward to doing it on a regular basis.

Upon arriving home, my wife informed me that we had an appointment at the Pediatrician in an hour. We had changed Emily’s formula three times in two weeks trying to find a more digestible solution and in the process she had gotten a good case of diarrhea which caused a diaper rash that had gotten pretty nasty looking. So, here we are again in the doctor’s office…three times in three days! The solution was a very expensive ointment and some “butt paste.” Changing her diaper became a long drawn out task. This came back to haunt us on Sunday morning, but I’ll get to that later.

After the Dr’s visit, we had a gentleman come over and deliver the feeding pump and give us some instructions on how to use it. Instead of getting three feedings at 9 pm, 1 am and 5 am, she will get one continuous feeding of 400 cc’s at 40 cc’s an hour for ten hours. She will then get three other feeding of 90 cc’s throughout the day. She was getting 110 cc’s six times a day. This meant that we could sleep through the night and not have to get up to feed her. I was doing the 1 am feeding and Dawn was doing the 5 am feeding. Finally, all three of us could sleep through the night…ideally.

As per usual, the first 24 hours went well. She slept through the night and the food went in with no problems. We woke her up at around 9:30 and planned on going to church at 10:30. I changed her diaper and it was empty, but I wanted to reapply the creams. As I went through the long process of wiping, applying one lotion and then the other, she peed. I started over and so did she. SIX diapers later she was finally changed and the lotions were applied!

We vowed that we would do everything in our power to avoid Dr’s for at least one day and enjoyed the rest of our day.

Sunday night we put Emily to bed and set up the pump to go through the night. It resembles an IV stand that you see in the hospital and has clamps at various points to stop the flow if needed. I filled the bag and set up the pump and went back to watch TV for an hour. She was a little fussy about fifteen minutes later, but we let her cry it out. It didn’t take long for her to stop so we didn’t think anything about it…until we went to bed. I was lying in bed and looking at the tube in the dark. Something looked wrong. When Dawn came to bed, I asked her to check it. I had neglected to release one of the clamps and a valve had popped and spilled formula into a puddle all over Emily. She was sleeping nicely in a puddle of formula. In the process of changing her sheet, mattress cover and her clothes, she woke up! So much fun!!! It was a long night for all of us.

Her feeding on Monday became a struggle again; so the saga continues. At the meeting with the nutritionist on Tuesday, she mentioned going to a GI doctor. At the pediatrician on Saturday, we asked her about it and she set up an appointment for this Wednesday. But on to Tuesday first…

Tuesday was a big day for us because we finally got our meeting with all the therapists and made a schedule for Emily’s visits. They will all be calling me within a few days and setting up appointments. We know that tomorrow the PT starts and we will meet with the nutritionist in a month, although we are still in constant contact with her. Emily will have her eyes checked once a month and her speech therapy will come once a week to work on her mouth feeding. It is finally all coming together…two months later.

Yesterday I met with the GI doctor. We had a huge storm here on Tuesday night and the doctor’s office didn’t have power. Fortunately, there were many windows and the doctor didn’t need any instruments that required electricity. She asked a lot of questions and scheduled an appointment at Kosair Children’s Hospital for an Upper GI. This will take place next Thursday and hopefully give us a better picture of what is going on in her tummy.

Through all this I have been going back and forth with a marketing person putting together a brochure for my summer camp that I am planning. I have rejected about ten different logos, but finally agreed on one. We go to print today and I will get some of them tomorrow. There is a conference at Southern Seminary this weekend and I am supposed to have a booth there to start my marketing. God willing, all will go well and I will get some reservations. I have put together a website and soon I will have all the kinks worked out of it. My time has been so full between the camp and taking care of Emily that I have not had time to look for a job, which is what I really want to do. God’s timing is not my timing and I trust that all things will work out in the end. I am where I need to be for now and when things calm down here, He will open an opportunity that will be perfect for me.

I have rambled WAAYY too long! Just know that although things here are very hectic, we are still praising God for all He is doing in our lives. He is in control and we are just His humble servants willing to do whatever He wants and go wherever He leads. He wants us right here for now, and we accept that.

We love you all and look forward to hearing about how things are going in your lives.

All for HIS glory,

Mike
Eph 2:4-7

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