Food and Feet

I started Gracelyn on oatmeal (the fish flake oatmeal as I like to call the baby kind) with mom's milk a week ago. She did okay, wasn't too much of a fan (the boys never were either with something so bland) but after a few days got the hang of the spoon pretty well. I personally am not a fan of pictures with food running down the chin so I didn't take many.

first time eating from the spoon...

and I believe she is finished and full!

So this week I began making baby food!!! I usually start making baby food between months 4-5 in preparation for month 6 when I begin solids but since Gracelyn became ill at 4 months I was a little preoccupied and baby food dropped to the bottom of the to-do list. With the main setback of the botulism toxin being constipation, the doc advised us to start with fruits. I have always started with veggies so I pray that she eats them well when the time comes. Tuesday I gave her homemade applesauce oatmeal for the first time, and it was a success!! She LOVED it! She even grabbed the spoon with both hands and sucked every bit of applesauce off of it.

so excited!!it's a keeper...

...so much that she cried real tears when it was all gone

Every day since Gracelyn has been home from the hospital, during her at-home therapy sessions 3 times a day, I always play with her feet and show them to her. It's never sparked her interest in them though. Last Wednesday at therapy Mr. Derrick, her physical therapist, showed them to her and waa-laa, she is all about them now! I mean L.O.V.E.S. them!

She grabs them while she's in her carrier, in the swing, on the floor, while sitting on someone's lap, any time that she can! It's so precious!

It shows Gracelyn's incredible muscle strength that she has gained.

She can hold on to her feet, both feet, while moving them all around!

Gracelyn has come so far and it is amazing and miraculous and every bit of it is thanks to our wonderful God!

Gracie's 6 month stats

Gracie went for her 6 month well check Thursday, 1 month and 1 day after being discharged from the hospital. In the hospital, she had just turned 5 months old and her last weight was 15lbs. At her 4 month well check she weighed 16.7lbs (95th percentile) and was 26 3/4" (95th percentile.) I am always anxious to see how much the kiddos weigh but this time I was especially antsy. She's too weak to nurse and unless someone else is around to give her a bottle I am forced to feed her with a medicine syringe. I just was unsure how well that was going for her growth...

I couldn't get her to smile while her feet were crossed
but I loved how she did that on her own!

Well, it is going beautifully! She weighs 17.4lbs (75th percentile,) up 2.4lbs in 1 month and 1 day and has grown exactly an inch, 27 3/4" (95th percentile)!!

Because her muscles haven't completely recovered she was unable to receive her immunizations. The plan is to get them at 9 months in July. The doc thought she looked great though and of course she gave big beautiful smiles!

She fell over trying to get her toy with her feet crossed but she finally gave me her drooly smile!!

I have an interview with the local newspaper Monday morning to talk about Gracelyn and her botulism battle.

6 months and an update

Gracelyn is half a year old and still our beautiful sweet princess!

She has had so much happen to her in such a short time. She is our miracle baby and has been a blessing to so many! We don't go to the doc for her 6 month well check until next Thursday so I don't know her stats and she hasn't started food yet so I cannot report on solid foods. I think I am going to start her on oatmeal this week, I'm nervous though. We have been having some issues with her swallowing in the last week. I'm not sure if it's her gag reflex or what, it's almost like she is choking and it comes on suddenly, hours after she eats. So I'm worried and have been watching her like a hawk.

can you tell that she's teething?
She's actually been doing this, chewing on her fingers, for over a month so we've been expecting a tooth for some time. She's still a happy girl but this last week I have noticed her gums a little puffy. I pray that teething, on top of her difficulties she is already experiencing, isn't an issue.

With her botulism battle she has had a minor setback on many things. The week before she was diagnosed she started rolling over. As of now, she cannot do that without being helped pulled halfway. The main things she's struggling with is ability to suck/nurse, constipation and overall strength. She only sleeps for 2 hours around the clock so I try, whenever possible, to sleep when she sleeps, the newborn method.
Gracie is doing amazing at physical therapy! I cannot believe how much she improves each week! Today she laid on her tummy with her head up for 4 minutes!! 4 minutes!!! That is HUGE and something she couldn't do for even 1 minute last week! "Mr. Derrick," her therapist, sat her up and she stayed sitting for 20 seconds!! Last week she couldn't do it at all. God continues to work!

not the most flattering picture BUT can you see the meat on those thighs???
She's certainly not wasting away!

She does have her pleasant little personality back! We LOVE to see her big smiles and hear her "talk," which she really started getting going this past week!

Blaine and Britton both wanted to hold her so after
they each had a turn they wanted her to sit next to them.
All 3 boys are such proud big brothers, they LOVE their baby sis!

An extra special Easter

Gracelyn ready to go to Mimi and Pappy's house to celebrate Easter!

mom and her babies!

Easter has always been my most favorite holiday, with Christmas a very close second. As a Christian, the birth of Jesus Christ is exciting, but the hope and meaning that surrounds the Easter holiday overwhelms me.
(I have been using that word, "overwhelm", a lot lately...since Gracelyn was put in the hospital, and in describing my emotions in the circumstances as well as with the outpouring of selfless love and support from so many. That word just sums up my feelings very well)

Anyway, I L.O.V.E. Easter, plain and simple.

our "little" family!!!

Every Easter is special but this year, not only was it Gracelyn's very first Easter, but on March 11 when she was diagnosed with infantile botulism, we were informed that the chances of her being in the hospital this weekend were extremely high. I was even told that I might as well just plan on bringing her dress and custom bow up the hospital and they would have a Gracelyn parade and show her off!

3 boys and 1 girl!!

I certainly understood how important it was that Gracelyn get the care that she required while in the hospital but the idea that our family still wouldn't be together after several weeks and to celebrate Christ's Resurrection together greatly saddened me.

Well, God obviously had other plans for Gracelyn and our "little" family because she was NOT in the hospital for Easter!!!! She is home and continuing her recovery with her family. We were all able to see some of the grandparents and our church family yesterday and today and it was GREAT!!!!

Gracelyn is a miracle!

I have been pretty emotional, ok, very emotional the last few weeks, and while every Easter weekend brings emotions, this one especially did. I just cannot imagine feeling more blessed than I do. I am so thankful to God for ALL that He has chosen to give me.

I say it a lot but I am so grateful to everyone that has prayed for Gracelyn. God heard our prayers and continues to heal her.

I tell Gracie often of the testimony she has now of God's love and His healing hand. It's ALL because of Him that we were able to celebrate as a family the sacrifice that His Son made for every single one of us.

the scoop on infant botulism

We have read A LOT about infant botulism, a lot more than I ever planned on reading about it. We have been told a lot about infant botulism, mainly from Dr. Mo since he diagnosed her and has actually treated it before. Many doctors, through absolutely no fault of their own don't know much about it since it is rare in this part of the country.
The question most asked by others in the beginning was, "how in the world did she get botulism?" a puzzled look followed as they waited for an answer. I didn't judge them or become defensive because I had the same reaction when Gracie was first diagnosed.
The truth is that we will probably never know how she contracted it, the most suggested possibility is that her brothers came in from playing outside, didn't wash their hands and touched her face or hands and then she put her hands in her mouth. In my infantile botulism support group, all the moms have assumed that it came from dust spores in the air, which very well could be another possibility. We just will never know.
Another question that is asked quite frequently is how is affects the body... Babies under 12 months have difficulty digesting the spores but when their immunity system is down there is less likely of a chance for the infant to fight it off. Gracelyn had a URI and double ear infection a week and a half before she was diagnosed. The toxin makes it home in the large intestine, which shuts down the GI muscles and explains the prolonged constipation issue. From there the toxin travels to the head and works it way downward, terminating the receptors between the nerves and muscles, stripping movements in the body. The body rebuilds those receptors from scratch but it of course takes time and while it destroys from the head down, it begins making new receptors which were most recently destroyed. We have been told that overall strength and her GI muscles could take the longest to repair, like up to 9 months.
The question tied with asking us how she got botulism is "do you need anything?" The answer is yes, PRAYERS. Gracelyn needs prayers for strength, so she can eat and move and cry and digest food. God heard the many prayers on her behalf while she was in the hospital and answered by allowing her to go home in 11 days instead of the minimum of 14 that we were told would be the very least! He has His healing hand on her and how blessed is she! It will take time and prayer.for Gracelyn to return to the happy healthy princess she was.

Gracelyn's battle~ the rest of her hospital stay

In the previous post I covered all of last week to Saturday, the 13th.
When I left off at Saturday she had lifted the corners of her mouth slightly at Dr. Mo! I didn't mention before, while she was receiving the medication on Friday, Dr. Mo told me that the botulism doctor in CA had told him that in some cases the parents had seen some type of facial expression on the second day after the injection, which would be Sunday. We noticed the smile on the next day!
A side note about Dr. Gesseroun, or Dr. Mo... we L.O.V.E. him! LOVE HIM! We found out Saturday that he was actually supposed to be out of town last week and the doctor that took over the weekly rounds on Monday was intended to be there instead. Dr. Mo had treated botulism before while Dr. Gormley hadn't. We knew that God had placed him there to save our baby girl. We also found out that Dr. Mo would be going off duty on Monday and a new doc would be there this week. Dr. Gormley was great, don't get me wrong, but we love Dr. Mo. He was her first doctor and had treated her and loved on her and she knew his voice and face and loved him too! When he first diagnosed her I asked what the chances were that she would be out by Easter. He said no likely but looked at me with a puzzled expression. I explained that after 3 boys, she was my first girl and this was her first Easter and I had an awesome dress and custom made bow for her! He laughed and said that she could dress up in a clown costume for all he cared, as long as she was in that bed. So on Sunday, as his bon voyage, I dressed Gracie up...

I had her covered with a blanket and as he walked in, I pulled it off to reveal her ensemble. He laughed so hard and asked if it was okay to take her picture. We said yes and he told us that there was a good chance of her picture ending up in a slide deck for a lecture! She will be the famous hula/botulism baby!

*Since Thursday morning, however you laid her head, that is where it stayed and her eyes were still dilated, not reacting and she wasn't able to open them much. Sunday brought more success! She was still smiling slightly (only here and there but it was so exciting!), turning her head about 45 degrees, actually raising her arms to her head, lightly gripping objects and opening her eyes a bit more than she had been able to! It was obviously more that what we had ever planned at that point in time, having been told that the smile within the first 2 days post IV medication would possibly be all the progress for the next week and a half.
*Monday morning showed even more improvement!!! She was moving her arms more and more, actually able to suck lightly on her pacifier (which she hadn't been able to do at all since the Monday before,) her eyes were finally reacting (a little, but it was still something!) and smiling all the time!!!! This was HUGE and left me speechless. We still were worried about her GI tract. The last 3 days they had given her an enema each day and still no bowel movement.

reading her new princess book with mimi!

The number of posts and messages to me on Facebook, emails, phone calls, visits, were and still are keeping me going. I have felt such an array of emotion during this past week, everything from helplessness, fear, worry, guilt (it wasn't that she didn't want to eat that Tuesday and Wednesday, she couldn't eat, she couldn't suck so I was starving her-That is a big one and I will battle that for a very long time.) Once she started turning around, obviously I still had fear because she was still sick but most emotions turned positive. We have such a great support system from our amazing church family to our own family and friends and my mom's church that I grew up in. It overwhelms me, in a good way! I feel so blessed and literally feel like my heart could burst from the love I feel for so many.

*Tuesday brought even more great news!! Gracelyn turned 5 months old and was being moved out of PICU!!!!!! She also got her oxygen taken off and had a bowel movement! Her progress left the doctors speechless!

5 months old!!!

I haven't mentioned yet how much attention Gracelyn has been given and not just for being adorable. Infant botulism is an extremely rare case and this being a teaching hospital, the staff is giddy at the opportunity to see it up close! Many many med students have come in and asked each day to examine her so they could present her to their residents. I oblige without pausing because the more of these students that research and know it, the better chance that babies that come in with it can be diagnosed quickly without ended up on a ventilator. The CDC calls daily, wanting to know updates. The doctor in CA from whom we obtained the medicine calls daily to check on her. And the Poison Control Center stops in as well as calls to see how she is progressing. All three will begin calling me once we go home.

*Wednesday was yet another fantastic day! The speech therapist came and discovered that Gracelyn had her gag reflex back!!!! That prompted the doctor to order a swallow test to see how she did and to see if her feeding tube could finally be moved up to her tummy and out of her intestines. Her eyes were less dilated but still not reacting much at all. The childlife department brought her a swing which made her a happy girl!! She also began working with PT to work on those muscles. Since she came she has been weak and limp, much like a newborn.

decked out for St. Patty's day!!

*Thursday was a big day, the swallow study! It had been exactly one week that Gracelyn was brought in (via ambulance) not knowing what was wrong with her until close to 8pm that day. A brain tumor had been suggested, thankfully that was dismissed after the CT scan. It had been a very big week, full of scares and yet so much progress! My baby was smiling and interacting and possibly about to drink a bottle if she passed her test. I was crying yet again. I cry daily and several times a day. The reasons have of course changed as she has began to improve. I am overwhelmed at the glory of our God. He is AWESOME!
Just as Gracie has surpassed every milestone in record time, she passed her swallow study!!! Her feeding tube was pulled up 7cm to her tummy and she was offered a 3.5oz bottle, which she had to drink in 30 minutes or they would put it in her tube, however, she chugged in 11 minutes!!! She is unstoppable!

chugging her first bottle!

and very happy after!

*As of Friday, her eyes are less dilated and almost reacting normally! She actually nursed for the first time since the Monday before last and did well!!!!!!!!!!! She is just very weak and cannot strictly nurse, only twice a day with bottle feedings in between.

*The doctor came in today, Saturday, one week and one day after her receiving the medicine, and said that it looks very good for her to go home TOMORROW! Tomorrow, tomorrow, one week and 2 days post globulin! That is HUGE and all thanks and praise must be given to God!
The botulism center in CA faxed a lot of information on, not only botulism, but the globulin that she received. It's only been available for a very short time so before it patients' stays were lasting months because the toxin just took over the entire body. I realize the huge strides in medicine these days but I give the glory to God for Gracelyn's amazing and miraculous recovery. How could I not? How could someone not believe in miracles? I know I do!

Gracelyn's battle~ the beginning

Thursday, March 11, began the scariest few days for me as a mom.
Tuesday, the 9th, Gracelyn stopped eating. She ate well all of Monday but then Tuesday morning, nothing. I really didn't think anything about it because as a mom of 4, the boys have all gone through those phases. I tried often throughout the day and still couldn't get her to eat. Wednesday came and still she wouldn't eat, but she showed no other symptoms, other than having moments the last 2 days of being inconsolable. I still didn't think much of it because I thought she may be teething. We went to church Wednesday evening and she people watched and interacted with people who gave her attention, like she normally would do. That evening she ran a fever of 102 but since she hadn't eaten anything I wasn't sure if she was able to swallow so I opted not to give her Tylenol. I bathed her instead and her fever eventually broke. Thursday night, sleep was nonexistent, we were up all night long, not even sleeping for a solid 30 minutes. It was bad.
Thursday morning I was preparing the little boys for CDO and getting dressed myself while Gracelyn was propped up on pillows on my bed. Even on nights she doesn't sleep well, she will be awake for a short time before taking a little morning nap so I was alarmed when I looked over and she was sound asleep, completely hunched over. I went over to her and tried to wake her up and noticed she was having difficulty keeping her eyes open, like she was drowsy and her eyes were glassy and not tracking . I was immediately concerned so I took her footed sleeper off and observed her arms just fall onto the bed when I removed them from her sleeves. She was completely limp. I was scared. I loaded the boys and Gracelyn in the car and called the pediatrician. I explained to the nurse what was going on and she asked how quickly I could be there. I told her an hour. I dropped the boys off at church, jumped on the highway, turned on my hazards and prayed and bawled for my baby.
We arrived in exactly one hour and the nurse took one look at her and I could see her concern. The doctor came right in and I could see it in her face too. Gracie's vitals were strong, her abdomen was soft, her eyes were the cause for extreme worry. They tested her blood sugar and it was normal so the only thought was something mental like a tumor or metabolic disorder. At this point I totally lost it. Dr. Bowen called for an ambulance to take us to Children's Hospital so I called Ryan and my mom to meet me there.
Doctors and nurses were waiting for us when we arrived in the ER. They immediately started an IV for fluids because she was dehydrated and then began lots of tests, including a CT scan, spinal tap, blood work and urine tests to see if possibly she had been given any meds by her brothers. After nearly 8 hours in the ER, all the tests came back negative/normal and the doctors were scratching their heads and throwing their hands up as we were moved up to PICU. I was feeling very discouraged, not sure that we were ever going to find out the cause of Gracelyn's sickness, because she certainly was a sick baby. She had laid on the narrow ER bed the entire time, not moving a muscle or uttering a peep, definitely not normal for a baby about to be 5 months old.
In no more than an hour after arriving in the PICU, her doctor, walked in and began examining her. I was on the other side of the room speaking to one of the residents, telling him her story (for about the millionth time) when suddenly Dr. Gesseroun announced that he was pretty sure he knew what was wrong. He told me that she still had her reflexes but all other symptoms pointed to infantile botulism. I was stunned. I quickly told him that she is a strictly breastfed baby and had never had honey or raw meat. He said she could contract it other ways and no matter how hard we tried we would probably never know how she got it. He left to go pull up some information for us to read. When he returned and I read the infant botulism article, it certainly did fit what was going on with her. He went over the plan of action and even told us that it may not be botulism and they wouldn't rule anything out and would keep working to find the cause of her illness. He had treated botulism in the past and warned us that it could take 2-10 weeks and would be a very long and bumpy road.
The CDC had to be notified so that we could obtain an immune-globulin IV medication. We found out that a botulism treatment center in CA had the medicine that we needed but it was a race against time before more receptors between nerves and muscles were terminated and she lost control of her lungs! Her face was sunk in, eyes had been affected, she had no gag reflex, no voice, no ability to suck or to turn her head or lift her arms and that is only what we could tell, we didn't know the extent of the damage. The lungs were next in line to be targeted by the toxin. The medicine was scheduled to be flown in Friday morning and we were assured that it would be plenty of time. The doctor reminded us several times that the medicine would simply stop the toxin from destroying any more receptors, it would NOT heal what had already been killed. We understood.
Friday brought another scary day. Gracelyn was declining and at rapid rate. The flight with the medicine was delayed and didn't arrive until evening. By early afternoon she was even weaker than she had been that morning and her arm reflexes were non-existent. At 6PM, she received the BabyBIG globulin intravenously without any allergic reactions so the first goal was met!!! Now we waited to see if she became worse.
It was and has been all about patience and faith.

Gracelyn on Friday as she was waiting for the med to arrive.

Saturday morning and afternoon brought really nothing that we could see, no further damage but no improvements either (which we were prepared for.) That evening her doctor, (Dr. Mo as we lovingly called him because we really do love him and he loves her!) came in to see her. She was asleep on my chest and when she heard his voice she woke up and I turned her to face him. She looked up at him and the corners of her mouth raised slightly! HOORAY! The first sign of what was yet to come! Dr. Mo and I hugged and I of course bawled! It was a awesome and that night I literally fell to my knees as I had several times in the past 3 days.

a little about Gracelyn Paige...

Our Princess Gracelyn Paige was born October 16, 2009! She is surrounded by 3 big brothers who love her and, since her birth, cannot wait to really play with her!!

She's been a happy, content baby girl from the get-go, loving all the attention she gets, including being held (which is A LOT!) Gracie is pretty spoiled, and that just may be the understatement of the century!


Up until when she was diagnosed with botulism she was doing well, hitting her milestones, despite random sicknesses like colds, a URI and an ear infection. She had started rolling over the week before she was in the hospital!

She is such a blessing and once she was born Ryan and I felt that God had most definitely completed our family! He has blessed me beyond measure!