Summary of our journey with Sydney!

May 15 2006 we were blessed with a beautiful full-term 7 lb 12oz little girl. Everything besides the epidural not working went great! Carter & Neil had named her Sydney early on in the pregnancy so there was no changing it. We had our little Sydney!

We were all realeased the next night with a clean bill of health. It was a great first night, she got up to eat once, and slept so well. The next morning I vividly remember sitting on the coach with our new little family reading to Carter & just enjoying. We'd been home about 12 hours when I saw Sydney start seizing. I had worked with a little girl for 4 years that had seizures so I knew enough to recognise the symptoms. After calling the doctor we rushed her to the hospital. We spent 2 weeks at Banner Dessert and then were transported to Phoenix Children's for another 3 weeks. Those 5 weeks were tricky, but for myself very sacred! We were blessed by so many! Because Sydney had left the hospital and then came back she was considered 'dirty' so she couldn't go to the NICU. But it ended up being nice to be able to stay with her in the hospital in the PICU. Every act of service, call, note, or visit during that time was appreciated on a compounded level! During our stay they learned she aspirated into her lungs when she swallowed & had severe reflux. That is why they put her on the NG feeding tube. She was requiring Oxygen and we couldn't seem to get her off of it. Her seizures were speratic and not really maintained with the meds. We had some wonderful doctors & nurses that made our entire hospital stay so do able. I knew I was stressed & tired when I'd put Abreva (cold sore medicine) on as chap stick each morning, and the time I was talking to the doctor in the ICU and I was literally falling asleep standing there talking to him. She was such a trooper during this time, she had over 18 IVs and they never got them under 5 tries. She had had some special blessings given to her and we knew Heavenly Father was aware of her! She was diagnosed with Congenital CMV when we left the hospital. But 8 months after doing a couple tests learned that it couldn't be Congential CMV. That was taken off the table for now, but left nothing in it's place for answers.

Sydney was sent home on her feeding tube, oxygen, and then wore a pulse monitor when possible. We learned a lot those first couple months. One night when I got up to do her feeding and give some meds I was startled to realise I had squirted hand sanitiser in my mouth rather than my water. Oops, that's what months of 2 hours of sleep a night will do to you!

Carter was thrilled to have us home. I didn't leave the hospital during those 5 weeks at all and I am so grateful to my family who took such great care of him! Neil was a trooper, he really struggled with the hospital setting, but was a champ with Carter. One morning when he was dropping Carter off at Sandra's she asked if he'd had breakfast. He replied that dad had given him a waffle cone. When Neil was confronted later, he replied "isn't that like a waffle".

Life when we got home was tricky, one day I had a sister in the ward call that I didn't know and ask if I needed help. She had no idea I was trying to get out the door, and was on the verge of tears I needed to sit and feed Sydney, but nothing was ready to go. I was so appreciative for the Lord taking care of me and sending her when I needed her before I realised I needed her.

We had to recreate normal.

This picture is significant in the sense of we really tried to still get out and have some family time that Carter was use to. Sometimes it was more effort than it was worth, but we managed, with the beeping machines and leaking tubes. Our snuggley lucky fit Sydney's feeding pump perfectly in the pocket and the oxygen over one shoulder would even out the weight. Even with all she had going, she was a great baby. At this time she would have a good week, seize, and then cry for a week or be very sedated. This went on for about 6 months while we worked on different medications.

It was a sweet moment when we finally blessed Sydney! I prayed so hard she would just sit tight during the blessing happy, not tricks, no surprises! She did great, it was a wonderful day! This picture was special for a long time, shortly after it was taken she stopped smiling for a number of months, but we were thrilled to get her smiles back!

Carter became our little helper. When she would seize, I couldn't usher him out of the room and do what I needed for Sydney. So he would very sweetly sit by me and we would have conversations about what was happening and why we were doing what we were doing. They were always very calm, and sweet moments. Because he had been by me numerous times the time he came in and got me off the phone to tell me "Sydney is having a fever" I knew what he meant. Sure enough I wouldn't have noticed her seizing for quite a while if he hadn't have helped. He had his world rocked pretty bad when we had Sydney, but he has been so good with her!!!

February of '07 we were able to get Sydney off of her feeding tube, and the oxygen. It was a wonderful thing to be able to hold her and turn in a circle and not get caught. I could take her clothes off without unplugging things. We were so grateful! She was drinking by a bottle as long as the liquid was honey thick. At one point we went to pudding thick. But that wasn't a problem, we had thickener we'd put in her milk! Look at those sweet cheeks, I can kiss them all I want now!!!

In August of '07 we went to California, and when we got home out of the blue Sydney refused to eat. She wasn't sucking or anything. She had had longer breaks by now with her seizures. The longest at this point was 5 weeks, and it had been a little while. But she stopped eating. It was hard as we struggled keeping her hydrated, but once she had passed the dehydrated & malnourished point we had to go back on the NG tube. That was not our favorite thing and she was older now and hated it!!!!

She got her first pair of braces for her legs at 18 months. She kept dragging her toe, and turning in her foot. She started walking shortly after that. It was a new found freedom for her! Go Sydney!!

Sydney figured how to pull her feeding tube out sometimes up to 5-6 times a day. I dreaded getting her out of the car because she was usually holding it in her sweet little hand, or getting her up from naps it was usually in hand. That little stinker finally did it enough that I gave in to getting a G-tube. That is a tube put right in her tummy. I fought it hard, but looking back, we love our tube!!! This is her after she got it in in Dec. '07

Look at those beautiful cheeks, they are so free of tape!!!

Sydney started the Ketogenic Diet in July '08. We had tried numerous seizure meds, and they would hold her for a while, but not long. It is an extreme version of Atkins. It is low carb & low protein diet with high fat. It is a bit tricky, but with the help of the doctors & dietitians it has been great. A third of the kids that go on it it stops their seizures and after 2 years you can take them off and they stay seizure free. That is the ideal scenario.

Sydney has spent a lot of her time with amazing therapists. At one point she had 10 therapy's in a week. A bit crazy, but they were all amazing and wonderfully helpful! They have turned into some of our dearest friends!

Due to Sydney still being on Meds that will eventually be taken away while on the diet she has no appetite from a very high dose of one particular med. So she has a formula that is made for the diet that she gets in her tube. She doesn't care much about food anyway, so candy on Halloween was no problem. She was just as happy holding her candy as eating it!

The diet has worked great! We made it 8 months seizure free!!!! We were able to get Sydney off one of 3 seizure meds, but the streak did end with a wopper this Feb. She spent some time in the hospital were she had many test done. She just keeps showing doctors what they need to know, or enough to confuse them. She had a clean MRI in October, and the one in February had changed. What that means we are still trying to figure out! We learned from a spinal tap that she has Cerebral Foliate Deficiency. They feel that is secondary to something else. Still working on that part also. We are working with a geneticist. We saw him 2 years ago, but with the new MRI they feel we need to head his way again. Sydney just keeps trekking along. It has been 3 months seizure free so far after her last one and we are starting to ween her from her med that has taken her appetite. So maybe we'll be eating soon!

Sydney is a joy! She has 5 words hi,kisses,shake,uh oh, & mom that she says and her signing has really started to take off. I find myself watching the Signing Time DVDs late at night alone trying to learn more to teach her. She is doing so well! We love Sydney with everything in us!!! She is her, we don't have to think about the things we use to in the beginning. We have learned to recreate our normal!

We love our Sydney!!