Has it been a year already?

I can't believe that one year ago this week we were starting physical therapy. I honestly can't even remember what it was like to have a child who wouldn't roll over or use all of her muscle groups. I am now trying to constantly get my 18 month old to stop moving. She is on the go non-stop. She has come so far in this past year. Praise God! She is moving great and her little head looks wonderful.
I was thinking about deleting this blog the other day. (I barely ever post anything on it anymore) The very day I was going to delete it I got a very encouraging email from someone who was just about to enter the helmet process with their child. They shared how encouraged they were by reading our posts. So, I decided to leave it here for a while. It was and is our prayer that all we went through would be used to help others. It has been amazing how many people have come to us for advice or support on issues with torticolis or helmet therapy. It has been a blessing for our family to see how God has used this in the lives of others.
Sorry for the short and random post, but that is all I can think of for now. It is a little late for my brain but this is the only time i have to blog. Like I said... Morgan never stops! Careful what you pray for.

Update

Morgan is enjoying her helmet free life.
I am enjoying putting little bows and ponytails in her hair. Here are a few pictures of her without her helmet. The one of her holding her helmet was made the day we left the hospital.We will be going back soon for a follow up physical therapy appointment. They just want to make sure she is doing everything she should be at this stage. I can say I am 100% sure she is plenty active! She is so busy and I am very exhausted by the end of the day from trying to keep up with her. She is not even walking yet. It scares me to think about what life will be like once she starts running.

Graduation Day

Today is a very happy day. Morgan has graduated from helmet therapy. We were so happy to leave Vanderbilt Hospital today with Morgan in our arms and her helmet in our hands. She looks great and we are so thankful this is over. We will post more info later when we have a chance about what the doctor told us. We wanted to go ahead and get the word out while I had a second. Here is one last picture of her in the helmet. Many more helmet free pictures to come!
Thank you all for your many prayers. As Avery said as we were leaving the hospital... "God heard our prayers."
More to come...

Get this thing off!

Lately Morgan has been very fussy. It is almost as if she is saying, "get this thing off!" She usually ends the fussing by pulling her helmet off. I have no idea how she is getting it off. It is molded to fit her head perfectly. It looks incredibly painful when she starts tugging on it. Somehow she turns it around sideways where she is looking through the ear hole. Then she pushes with all her might and off it pops. Usually she gets it stuck and then I have to come running to the rescue. The other day we where on our way home when she started pulling it off just as we got in the driveway. This time she didn't cry she just started laughing. I knew she was OK so I took off inside to get the camera. We are just a few days from what we HOPE and PRAY will be our last appointment in Nashville. Enjoy the pictures.

where did it go??????

Several days ago I posted a blog entry about our trip last week to Disney and today I loged on to post a few pictures when to my surprise there is no post about Disney anywhere. Now, I know I am not crazy because I know of others who read it and asked me to post pictures... where did it go? So let me sum up what was in the missing post.
It has been a while since my last entry because we just returned from a long stay at the happiest place on earth. That is right, we have been in Disney World. It was a great vacation and both of our girls had a blast. The weather was very warm and not great temperatures for wearing a helmet. We talked the trip over with her Dr. ahead of time and he suggested we remove the helmet anytime we were outdoors. The risk of her overheating was just to great. I have to say I so enjoyed seeing her sweet little head all week. For 5 days Morgan traded in her pink helmet for a pair of pain Mickey ears. She was just to cute.
Tomorrow Morgan will be trading in her helmet for a birthday hat. She will turn 1 at exactly 3:12 pm. I can't believe she is already one. This year has been full of ups and downs. A first birthday is always exciting but for me this one is especially exciting. It is very encouraging to look back over this year and see how many times God has provided for, comforted, loved, and guided us. I know what we have gone through is so small but it makes me wonder how and why people go through things with out Christ. I have leaned on Him so many times during the last year. I would not want to go through this again but I am very thankful for the things God has taught me along the way!
I hope all of this makes sense, after all it is 1:00am. I guess that means it is now Morgan's birthday. Happy Birthday!

Another Appointment Over

Well, I left today's appointment a little discouraged. I was secretly hoping the Dr. would say, "her head looks great you can take off the helmet!" Of course, I know her head still has a little flatness but I was going for positive thinking. He looked at her head and said she was looking good but we could have a few more months to go. I looked at Will with one of those I am going to cry looks. He then said to the Dr., "What if we come in next month and say we are finished?". He said that would be OK too. Her forehead is now corrected which means there is no longer any worry of her eyes of ears becoming unsymmetrical. That means no surgery! He said at this point he is just being a perfectionist and he would like to see one spot on the back of her head fill out another 2 milometers. I appreciate him being a perfectionist, after all that is why we are paying him so much. At this point even if we see no change over the next month I don't think anyone else would ever notice the flat area. She already has a head full of hair and as it continues to grow it will become less and less noticeable. At the end of the appointment he said there was a good chance we would see a big improvement this month and he would then suggest removing the helmet for good! I am going to be praying for a major growth spurt and a major change. I am learning a lot about patience and trust through this experience. I am just so ready for this to all be over with.
In a previous post I mentioned taking the girls to have their pictures made outdoors. Rebecca Marr, who made the pictures, gave me permission to post two of them here. Thanks Rebecca for emailing them to me. I wanted to share them here on the site so you could see how much better Morgan's head looks. These were taken almost a month ago and her head has improved so much since these were taken. You can really see the improvement in the pictures where she is looking to the side. I also posted Avery's 4 year pictures... just because they are so adorable. Rebecca does a great job. If you are interested her website it is www.amomentintimestudio.org

Easter

Here are a few pictures from Easter. Morgan had a great first Easter and Avery had a wonderful day. Avery really got the meaning of Easter this year and has been asking so many questions. She is such a sponge. I thought you would like to see some pictures of Morgan's helmet decorated for Easter. Avery put the egg stickers on there while I was not in the room. She did a good job. I wasn't planning on decorating it with eggs but it worked!
We are anxiously awaiting our appointment in Nashville next week. We will find out at this appointment how much longer we will be seeing pink. I can't wait to get this off and get my sweet little girl back.
Enjoy the pictures!

Two Months Down and Two to Go!

We had another appointment at Vanderbilt this week. Dr. Kelly said he could see a little change this month. He felt we were moving in the right direction. Will and I didn't see as much of a change this month as we did the first month. She just didn't grow very much. She is due a growth spurt so hopefully we will see a lot of change before our next appointment in April. Her helmet was very loose so they added a few inserts between the foam layers around her forehead and neck to keep the helmet from moving around on her head so much. It is very snug now. It fits her just like it did the day we got it. Hopefully this will help her progress more over the next few weeks. Two months down and two more to go.
Yesterday was a fun day. I took the girls to have pictures made at the park. We had several made of Morgan without her helmet on and then a few with her wearing it as well. It was so fun to see her hair blowing in the wind. She didn't know what to think of feeling the sun and cool breeze on her head. Avery also had a wonderful time. She had her picture made while climbing a tree. She hasn't stopped talking about it.
We have had unseasonably warm weather the last few days. The girls and I are trying to take advantage of the warm temps and have spent a lot of time outdoors. I have been reminded of how thankful I am that Morgan will not be in her helmet this summer. Her little head gets very hot under her helmet on warm days. We should be getting it off just as the temperatures really heat up.

Look out! Morgan is on the move now!

Yesterday's Physical Therapy appointment went very well. Morgan was ready to show Mrs. Karen all of her tricks. She crawled across the room with her hips up and using both legs and arms, she stood up and set back down, and she crawled up the stairs like a pro! I was very proud. She agreed that Morgan has made very impressive improvements in just one week. All of our hard work has finally paid off. She is now just like every other 10 month old. The only problem we have left to concur is the knots on both sides of her neck. The knots are from the torticollis and they just don't want to go away. We have been doing stretches and massaging her neck three times a day since December. I am a little frustrated that they are still there. One thing at a time I guess. As for physical therapy, we will go back in two weeks. That's right not one week but two week! We are very excited. If she is still doing this well in two weeks we will be on our own for one month and then back for a follow up visit. After that we will go once a month until she is walking well just to make sure she is 100%! So for now, I only have to worry about doing her stretches. It is such a stress relief to not have to worry about doing "therapy" with her anymore. We will of course continue to watch her and encourage her, when needed, to use both arms are strengthen her legs. She will be running around here before long.
We have an appointment at Vanderbilt next week. Morgan has been wearing her helmet for 2 months now and is expected to be in it for 2 more months. I am praying we go next week and he says he thinks she will be out of it next month. We are seeing so much improvement and she has the cutest little head now. I can't wait to get the helmet off so we can admire her sweet little head anytime we want.
Morgan's incredible progress over the last week is such an amazing answer to prayer. Thank you to all who have been praying for her. It has been my prayer that Morgan's helmet journey would bring our family closer to God and closer together. I am daily seeing this prayer and so many others answered.

Starting to see the light at the end of the tunnel!

This is a just because picture! Morgan keeps very warm in her helmet even in the snow!

It is so fun to see your little one experience their firsts. Their first smile, first laugh, first time to roll over or walk. It is even more fun to see those firsts when you have been working so hard to help them accomplish one. At physical therapy this week we worked very hard with Morgan to help her pull up to a standing position. Her little legs just didn't seem strong enough to hold her up for more than a few seconds. The next morning we went in and she was standing up in her bed holding on to the side rail just smiling at her Daddy. What a proud moment. Now she is pulling up on everything. Hopefully this new found skill will really help to strengthen her trunk. We are still working on getting her hips even, and trying to strengthen her trunk. She is really doing well. It is amazing how fast she is changing. Everyday she is learning a new skill. It is very rewarding to be able to see her finally accomplishing the skills we have been working on for so long. I feel like we are starting to see the light at the end of the tunnel. I know in a few months from now she will be running around this house and I will be trying to keep up with her. I am sure at that moment I will be wondering why we went to physical therapy!

I praise God for Morgan's progress and for being able to learn more about his wonderful faithfulness through this experience. As we have gone through this experience and all of it's ups and downs, I have been reminded of His amazing grace. We are always in the grip of his hand and never far from his comfort and love. I have found so much comfort in knowing that God is still in control!

100% !!!!

We heard the final word today from our insurance company. They will be covering 100% of Morgan's helmet therapy and visits to the specialist!!!!!!!! We are so happy. We will now be working on the reimbursement process. Hopefully this part will go smoothly. We are so thankful this prayer was answered.
On a different note... Morgan did great at therapy today. She is really starting to correct some of her issues. We will continue to go every week for a while.

Good things come in small packages!!!!!

I love being able to post good news! Usually going to the mail box isn't that exciting, but today was different. We got a letter from our insurance company stating in BOLD print, "you have been approved for coverage..." This is such an answered prayer. For those who don't know, we were told Morgan's helmet and the cost for visits to the specialist would not be covered. The specialist actually won't even file the claim for you, because it is just not covered by insurance. Well, prayers are answered. We don't know at this time if all of it will be covered or just the part for the specialist, which would be about half. Will is going to talk to the insurance company tomorrow to get more information. We will continue to pray for complete coverage, but we will be thankful for any coverage at this point. I honestly wasn't expecting to have any of it covered. I am in shock and I don't know why. I should have just trusted that God would take care of our needs as he always has. Praise God! We will keep you posted on how this turns out. Yea for small packages in the mail!

Making Progress

So much has happened since my last entry. I will try to keep it as brief as possible. We went back to Vanderbilt this week and saw Dr. Kelly. He said that Morgan was making some improvement! He sent us over to have her helmet adjusted. They removed a layer of the lining from the back. Hopefully over the next four weeks we will really start to see her head start to reshape. So far it has only been a subtle change. The appointment went very quickly and Morgan of course did great! We have really been hoping Morgan would only have to wear the helmet for 3 months, but Dr. Kelly told us we would probably be looking at four months. That was disappointing to hear. We are going to keep praying for 3 months anyway! Here are some pictures of her in her helmet. We put new stickers on it this week. We think it is pretty cute.


Today we had a physical therapy appointment. Morgan seems to be sitting much straighter which means she is not holding one hip higher than the other anymore. YEA Morgan! On the down side she still wants to use her right hand more than the other. This unfortunately affects the way she crawls, sits up and props. You can see in the above picture her right arm and hand have been wrapped in an ace bandage. This is to encourage her to use the other arm and hand. Of course when her physical therapist wrapped her up today Morgan just set there.Tonight when I tried to wrap her she acted like I was causing her pain. After several tries I got it wrapped and she did great. We played with her bowling set and she rolled the ball with her left hand successfully!!!!! After I removed the wrap she rolled the ball with both hands. Mission accomplished. We will wrap her arm and hand twice a day during our structured play time. We will go back next week to see the therapist and see what happens from there. I look forward to the day when I can sit down with Morgan and play and not have to worry about which arm she is using or which way she is rolling and just enjoy being with her. Today, that day seems so far away.

Missing Her Little Head

We are almost to the one month mark! It is hard to believe Morgan has been in her helmet for that long already. We have two to three more months to go. Hopefully no longer! She really is doing amazingly well. We are the ones who are still adjusting to life with the helmet. Lately, I have really been missing her sweet little head. We take the helmet off for a few minutes every morning and then again at bedtime long enough to give her a bath. I try to enjoy every second of those short moments. I love to cuddle with her when her helmet is off. Her sweet hugs just aren't' the same when a large helmet is knocking you in the face. I want to enjoy the last few months of her being a baby so badly. Unfortunately, I find myself just wanting to fast forward time a few months from now so this will all be over with. I know in just a short time I will be back to kissing her head and shopping for cute hair bows but it is often hard to keep that in mind. For now, I will just have to adjust to her little pink helmet hugs.

We are back to "normal"

Morgan is FINALLY over her chickenpox. She is no longer contagious. It will be a while before all the spots are gone but, at this point we are just happy they have all dried up. Today was her first day out of the house and I think she was happy to have some new scenery. We were both excited to see a little snow falling as well.
Morgan had her 9 month check up and the Dr. said she is doing great! We also saw the physical therapist today and Morgan got quite a work out. She hasn't made that much improvement since her last appointment. I think the chickenpox slowed us down a little. She wasn't interested in me stretching her neck or doing any of the other activities, we are suppose to be doing, while she was sick. Hopefully, now that she is better, we will start moving forward again.
Morgan has now had her helmet on for about 3 1/2 weeks and we are so happy with how much her head has already improved. We really didn't expect to see such a major change so early. I think this should be credited to all of the prayers being said on her behalf. We are looking forward to her next appointment in Nashville in just 2 weeks.

Prayer Request

We have a prayer request tonight to share with everyone. Last night before putting Morgan to bed I noticed four red bumps on her forehead, nape of her neck, and behind her ear. This morning when she woke up they had tripled in number and tonight her head is covered in red bumps. She also has several spots on her tummy and back. I talked with someone from Restorative Health Services this afternoon. They recommended we take her helmet off for a few hours and see if the red spots get better. After 3 hours with it off, unfortunately, they stayed the same. We will have to call our pediatrician first thing in the morning to get her in. We are praying this is not anything serious and won't require her to leave the helmet off for long.

Stupid Things People Say...

Today we took another trip to Wal Mart. For the most part it was much easier than last week. Just a few odd glances and one or two questions about what the helmet is for. There was one comment that a lady made that I just couldn't pass up posting. I hope you get as much of a laugh out of reading it as I did hearing it straight from her mouth. "That is the smartest gadget I have seen yet. So many kids fall out of those shopping carts and get seriously injured. I think it is smart to put a helmet on her!" I didn't know what to say to her. How do you respond to a stupid statement like that. I wanted to ask her how many kids she had seen fall out of shopping carts. I am sure it does happen. I am just not sure that it happens often enough for someone to design a helmet that your child would wear while riding in a shopping cart. I just looked at her and said, "That isn't really what it is for."

On to another topic... sleep! Unfortunately, this is not a topic that I know a lot about. Morgan has not slept very well the last few nights. I hope tonight will be different. Everyone has been asking us how they can pray for her. I think as of now, sleep is our main prayer request. She seems to be doing well during the day. Unfortunately, I am so tired from being up so much at night with her, it is hard to focus on her physical therapy during the day. I am sure she will get better over time.
I will try to post a picture soon of her newly decorated helmet. We put her name on it a few days ago. It is pretty cute.

Physical Therapy Update

Morgan had her first physical therapy appointment with her helmet on yesterday. She is doing well. A few little issues seem to have returned since starting helmet therapy. She is doing great with holding her trunk straight and reaching for things with both arms. The problem we are going to be trying to correct over the next two weeks is with her hips. While sitting she seems to raise one hip higher. To help in correcting this I will have to place a towel under her left side while she is sitting. I will keep a towel in her highchair, car seat and swing as well. Basically anytime she is sitting we will use the towel to try and correct this problem. She is also working on crawling. I learned a few things I can do to help her pull her knees up and use both legs while crawling. Right now she likes to use her elbows and one leg to scoot along. Lastly, the muscle in her neck is very tight again. She was not happy when the Therapist was stretching her. I will have to stretch it out several times a day again. The muscle issue is from the Torticollis. The Torticollis is what originally caused her to start favoring one side of her body over the other. It is a lot harder to stretch her well with the helmet on but we will figure it out.
As for sleep...she has not slept as well the last two nights. Last night she was up several times. I guess we can't complain too much. Overall she is adjusting so well. I think that her body temperature is starting to adjust to the helmet as well. I have not noticed her sweating as much today.
She has done so well and we are so thankful. We have seen so many prayers answered already!

Sweet Dreams

Last night was Morgan's first night in her helmet and she did amazingly well. She had a difficult time getting to sleep, and woke up once shortly after falling asleep. After that she slept until 6:00am. She ate and went back down for another hour or so. This is better than she normally sleeps. We went in to check on her several times during the night, and I just couldn't believe she was still asleep. She cried out several times throughout the night but always settled herself down. Tonight she went to bed very easily and only cried out several times. I am truly amazed at how well the evenings have gone so far. I know we have just begun so it could change, but we were warned that the first few nights would be the toughest. So far so good! We are so thankful she is adjusting so well and so quickly.

Today was our first public outing in the helmet. We went to Lowes first and the pink helmet caught the attention of several people, but overall it wasn't that bad. Then we went to Wal Mart and turned many heads. I am OK with those who look at her with a surprised and confused look. That is to be expected. After all, it isn't everyday you see a little baby in a pink helmet! It is those people who walk by and notice the helmet and then almost break their neck trying to get a closer look that bother me. Really, it just isn't polite to stare! There was one really sweet little girl who was talking to Morgan and making her laugh. As we were strolling off the little girl said, "She has a pretty pink helmet". I said, "thank you" and then her father looked so embarrassed and shhhed the little girl. It is funny how adults get very uncomfortable when they see her, but children just simply ask why she is wearing it and then go on about their business. I am sure we will get use to people starring and asking questions.

Pretty in Pink

We left bright and early yesterday morning. We arrived about an hour before our scheduled appointment so Will decided to call and see if they could get us in early. Praise God because we got in at 12:30pm. and that means we were able to head home early! The appointment went basically like this. First they properly fit the foam lining of her helmet to her head. They had to make several adjustments as well as cut out the holes for her ears and face. She did well during that part. We then left for about 2 hours while they fit the lining to the outer shell. When we arrived back it was time to practice putting the helmet on and off. This was not Morgan's favorite activity! She cried a lot as we were learning to correctly put it on and take it off, over and over again. It is much harder to put on than I had thought it would be. I am sure it will get easier with practice. We left the appointment with Morgan in her pink helmet. She looks like a little football player.... a cute football player! She wore the helmet for an hour on and an hour off for the remainder of the evening. Overall, she did really well on the ride home. Last night she was able to sleep with out it and first thing this morning it went back on. She had a hard time taking a nap this morning but for the most part she is adjusting well. She will wear it through out today with 30 minute breaks every hour or two. Tonight she will sleep wearing it and then from that point on she will be dressed in pink 23 hours a day. We pray that she will sleep well! I am sure it will take some time for all of us to adjust.



This is Morgan "getting to know her helmet". She really loved it and didn't like it when her Daddy took it from her. She started to cry. It was pretty cute. She loved it until we actually had to put it on her.


This was Morgan on the ride home wearing her helmet for the first time.



Avery wanted to wear her helmet this morning as soon as she woke up. This is the bike helmet she got for Christmas last year from Uncle Paul and Aunt Candice! Avery is enjoying having a helmet like her little sisters!



And here she is, pretty in pink!