In the hospital

Peyton was admitted to the hospital this afternoon for dehydration. She has not been feeling well for about a week with a cold. She hasn't been eating very well either....due to drainage from the cold and some reflux issues. She woke up this morning with a temp of 101.4 and was so lethargic and not eating at all. We took her to the peds office and he decided to admit her for some IV fluids. She has been getting fluids for several hours now and we can already see a big difference. Her color is much better and she has taken some bottle since we arrived. Praying this is a quick little visit and that we will be home again tomorrow. This is her first hospital visit that hasn't been due to her seizures so it's a little strange not to have her hooked up to the EEG but we aren't complaining!

Ipad and squash

 She likes the IPad 2:-)

She doesn't like the Squash.

That Connection

Peyton has had quite a month.  After her successful eye procedure, she got her very first fever.  It was 102.5.  I was terrified her seizures would just go crazy, but they didn’t!!!  They actually decreased when her fever was really high.  She had an infection caused by the drainage from all the junk (for lack of a better medical term) that was released when her tear duct was cleaned out.  She went on her first antibiotic and it cleared right up. 

Christmas was great.  Got to see lots of family and had lots of get togethers.  Peyton had a little cough before Christmas that got worse thru the holidays and we took her to the pediatrician the week after Christmas because she had started running a low grade fever.  She had Pneumonia.  We caught it early so they loaded her up with more antibiotics.  The seizures did act up this time but they were manageable. 

So, fast forward to now and the pneumonia is gone, her new kid cart and stander arrive Monday and we are soooo excited about it.  Who ever thought I would be this excited to get special needs equipment in my house???   We have been using loaners and I am eternally grateful for these, but still very excited about the new stuff!

Some sweet moments lately….she has an awareness of us that hasn’t been present before.  She will follow us with her eyes if we walk by and she even smiled at Ed this week when he was playing with her.  The kids and I got some little smiles out of her this morning.  How to explain how this makes me feel is difficult….a year ago, I was praying that the seizures would stop and she would be a completely normal child…..now, I pray for the seizures to stop and for Peyton to just smile at us and know we love her – yes, I still want her to develop normally, but that is vastly less important to me now – I just want us to have that emotional connection with her.  This is more important to me than her sitting, crawling, walking, saying her ABC’s or meeting every milestone.  I don’t mean we aren’t going to continue working with her every single day to meet her milestones, it just means that I’m a little more patient with the milestones than I am with getting that emotional connection.   Of course, I may change my tune after she’s been smiling at babbling at us for a few months, but I reserve the right for future impatience and complainingJ

Will post some Christmas pics later this weekend!

Procedure & Earrings

Happy Weekend!!  Peyton had a very successful procedure on Wednesday and her eye feels so much better.  We didn’t realize how uncomfortable she must have been, but it was almost immediate relief for her.  She even seems able to focus a little better since the procedure.  They were able to remove the offending eye lashes and clear her tear duct.  The tear duct was very very clogged up with lots of nasty build up that he cleaned out.  We are so glad she was able to have something done that would give her some relief.  We feel helpless so much of the time that it was a great feeling to get something 'fixed' for her.

Posting a few pics….one of she and my sister prior to surgery.  My sister works for the ophthalmologist who did the procedure and she got to be in the procedure which gave us lots of comfort.  The other is the day after the procedure and she is looking at her toy.  I know I know…..looking at her toy doesn’t sound like a big deal, but her lack of focus that we are used to makes this a very big deal!!  Plus, the Santa hat was too cute not to post!

 Aunt Ruth wore these earring especially for Peyton.  Those gawdy things always seem to catch Peyton's eye so Aunt Ruth does her best to always have something shiny on when she is around her.  Yes, she loves her that much:-)

Her eye is still puffy from the procedure but she is still very clearly looking at her toy:-)

Patty Cake

Peyton likes playing patty cake!!!!!!!! This is so huge to us. She has never ever shown much interest in anything we try to do to entertain her, toys or otherwise, but the other night, Ed was holding her in the recliner and she was fussing and fidgeting and he took her little hands and started playing patty cake....she calmed down and starting watching what he was doing with big 'ol eyes. I thought it was cute but to be honest, I thought it was a fluke. So, last night, I was holding her and she was fussing and fidgeting and Ed said, "Play patty cake with her" so I did and low and behold, she calmed right down and as long as I was doing patty cake, she was fine, but the second I stopped she fussed again. I can't even explain how wonderful it is to know that she was paying attention and enjoying us. So what if she can't sit, hold her head up or stand yet, SHE LIKES PATTY CAKE:-):-)

Peyton has an issue with her right eye. She has her Daddy's long beautiful eye lashes, but she also has a droopy eyelid that causes some of those long beautiful lashes to get in her eye. She has constant lashes in her eyes and this is so uncomfortable, so next Wednesday, she is going to have a procedure done that will remove the offending lashes. It is electrolysis (I am sure Ruth can give you all the medical terms for her condition and the procedure). She has also had a clogged tear duct since birth and he is going to take care of that at the same time. We are happy to have this done as it will give her some relief. She will have to go under general anesthesia to have it done and this is a bit scary, but Aunt Ruth will be in there with her and our favorite opthamologist, Dr. Christianson, is doing the procedure so we know she's in the best hands. If you think about it next Wednesday morning, please say a prayer for her that things will go smoothly!

Doing the Next Thing

Happy Thanksgiving!!!  There is so much to be thankful for this year…..some things I didn’t even know to be thankful for a year ago.   Last Thanksgiving, Peyton was 4 weeks old, keeping us up at night and I was recovering from a C-section.  I thought life was tough…..HAHAHAHA….little did I know!!!   This past year has had ups, downs, heart aches, heart breaks,  fun times, hard times, sad times, happy times but thru all of it I have learned that no matter what life throws at you, that you really can survive it.  You can pick yourself up, PRAY, dust yourself off, PRAY, put on your big girl panties, PRAY some more and move forward.  You can look around you and realize that there are so many blessings out there and you just have to find them.  Some days, you have to delve deep into your soul, but you will find a blessing and something to be thankful for. 

I have learned to do the next thing.  Back when this all started, and we were home between hospital stays, I wasn’t functioning well and wasn’t coping well.  I wasn’t getting any sleep and at one point all I could do was sit and stare into space.  I remember my wise mama (who stayed with us for so much of those beginning days) saying to me…”Heather, you need to do the next thing, whether it’s brushing your teeth or putting a fork in the dishwasher, just do the next thing”  So, I did the next thing and kept doing the next thing and that was my mantra many times over the next few months…..just do the next thing.  Sometimes, it was as simple as putting something in the laundry basket or emptying the dishwasher, but doing the next thing helped me….helped me realize in all the chaos and uncertainty and fear that I was still me, Ed was still Ed, the kids were still the kids and Peyton was our very special blessing.   God entrusted her care to our family and our job is to love her, care for her, teach her, fight for her and be thankful that she is in our lives.  No one ever expects things like this to happen, but when it happens,  you find out real quick what you’re made of and sometimes you don’t like what you find,  but you learn so much from an experience like this, that you learn to forgive yourself for your failures and you strive to be a better person, a more humble person, and a more thankful person.  

I guess after all my ramblings that I should update you on sweet Peyton.  She is still having more good days than bad.  She had her first illness (besides the seizures) since birth.  She caught a tummy virus that went thru our house like a tornado!!!  She handled it probably better than the rest of us and never even ran a fever with it like the rest of us.  I have been so scared that when she did get sick for the first time that the seizures would just go crazy and we would end up back in the hospital, but it was a very non-eventful illness and she is feeling lots better.  Still trying to hold her sweet head up and spending more time in her stander and kid cart.   She seems to be doing more with her hands and will attempt to reach and grasp things, but can’t quite make her hands do what she wants them to.  She is more responsive to our voices than we have seen, especially Ed’s voice.  If Ed has been gone for a while and he comes in the room and she hears his voice, her little head turns and she isn’t happy till he’s come over to play with her for a minute.   She is most definitely a Daddy’s girl.

I hope everyone has a wonderful day tomorrow, full of good food, good family, good friends and the ability to recognize all the blessings in our lives.  

this & that

Let’s see….where to begin.  Lots going on in Peyton Grace’s life over the past week!!!  First, her big birthday – she hung out with her Daddy all day and anyone they ran into got their photo taken with her in a birthday party hat!!  They met me for lunch and we had a lovely time!  Her birthday party was on Saturday and lots of people came to wish Peyton a happy birthday and help us celebrate her first year (with Ed’s chili and wings).  She really seemed to enjoy the party and we got some really cute pics….posted below. 

To be honest, celebrating her first birthday was something I almost dreaded.  I was having a hard time with the fact that she wouldn’t be like most 1 year olds…..into everything and crawling or walking and happy and smiling.  Don’t get me wrong, lots of acceptance has gone in our lives this year, but the first birthday is just so representative of progress and development and it absolutely breaks my heart to think about what has been taken from her this year, but you know what????  Her day was a celebration…..a celebration of what she has overcome this year, a celebration of the fact that she isn’t having 100 seizures a day, a celebration that she has not been in the hospital in 9 months, a celebration of the fact that she doesn’t sleep all day anymore, a celebration of the fact that she is ALIVE.  Peyton is by no means a typical 1 year old, but Peyton is her own person and even tho’ her first year has been so unlike our plans, her first year has inspired so many and taught us so much that we couldn’t possibly be sad on her first birthday.  If anything, this was a HUGE milestone for her.  She made it one year, in spite of the thousands of seizures she has had.  She is growing, she is progressing and she is loved. 

I want to tell you about our day yesterday.  Our friends with CDSA (early intervention) invited us to come to a conference they were having about Assistive Technologies.  They wanted us to come and share our experience and talk a little about how much Peyton’s equipment is helping her and our perspective, as parents just beginning on this journey.  It was such an honor to be invited and to get to go and meet so many wonderful people that devote their lives to helping kids and families.  It was a humbling experience and I am by no means a good public speaker, but when it comes to Peyton, the words come much easier.  Peyton got to hang out with some of her favorite people and did so well.  Sometimes, crowds bother her, but she seemed to have a sense about where we were and was so sweet the whole time.  They fed us a wonderful lunch and it was just a great experience for both Ed and I. 

Peyton’s seizures seem to do better than we have a bad day or two, but we can usually pinpoint the cause for the bad flare ups so we continue our battle with the seizure monster.  One day we will beat it!! 

Enjoy all the pics!!!!