Sydney loves her Daddy...

No news yet...

Well, as I expected the lab results are not in yet. I promise to let everyone know as soon as we hear any new news. We had a nerve/muscle test today and that went well. I guess her nerve and muscle response in her arms and legs seems normal. I could have told them that before the stuck her with a bunch of needles and shocked her with that cattle prod, but they are the doctors and I guess it was necessary. So, that is some news to give you. Tomorrow, we will do another barium swallow to see if there are any twists or obstructions in her upper GI. Then, the surgeon will be able to see what he's working with I guess when he has to put in her stomach feeding tube. We have the consult with the surgeon next Wednesday. Thanks again for all your prayers and support. Sydney has strung a few pretty good days together. We are not sure, but maybe her new medication is making her episodes more tolerable. She is sleeping through the night and gaining weight. We have her on a continuous drip with her feeding tube at 20-24oz a day and a higher than normal calorie intake. Her little tummy looks fuller but she's still so dainty. Her feeding tube is portable so we can take her out and about and she doesn't seem to mind the tube. I'll update you all soon... Love Amber

Back to the Hospital we go...

So, we had to go back to Dorenbecker's, today is our third day here. I just found out they have computers we can use. We had our GI appointment and then we were admitted to the hospital. Sydney really needed to eat since she weighs less now than she did on May 5th. I know it's scary. But we have now gotten her a feeding tube and she is keeping it down great so far. Her episodes are the same, horrible, but at least she is getting food in her tummy. We did a barium swallow test and found that she is getting some pooling on her vocal chords and it's going into her airway. This is not good. So, we will continue with the feeding tube in her nose for a while, which just so you know doesn't seem to bother her too much. Then, most likely we will have to put a feeding tube in her tummy. However, we will begin to practice eating and swallowing with the speech pathologist soon. Her little swallow muscles just aren't very strong right now and we expect that her brain might have something to do with all of this. We will keep trying to get her help whatever that may be. The doctors have been very good with her and with us. They say we may get to go home tomorrow for the Fourth of July but we will see how Sydney is then and they will show us how to use the feeding tube and all the equipment in the morning. Thank you everyone for your prayers and support. Love, Amber

Well, we had our neurometabolic appointment and they had a conference with all the brightest brains around. They all agreed that we will wait for one of her blood tests to come back before we do any other testing. That test doesn't come back until July tenth. However, they did all agree on that test being the most probable as far as a diagnoses. The prognoses for that disease is not good, so we are hoping it is negative. In the meantime, we will be doing physical therapy, seeing a nutritionist and scheduling some nerve testing at Dorenbeckers. We also found out that she has not gained any weight in the last month. We are trying to be aggressive with feedings but it has been difficult. I also want to let people know that if I have not called you it could be because I broke my phone and lost a lot of numbers. I will keep you all updated when any new news comes in..... Love, Amber

Please Forgive me for not updating my blog lately, we have been very busy with all our appointments and phone calls and dirty diapers. However, I really don't have much to update. We have continued to be on a wild roller coaster ride for the past week. Like my dad says, " Two steps forward, one step back..." Sydney had a rough weekend, but the past two days have been easier on her. Yesterday she had a great day, it was her best in a long time. We always hope that she will continue to progress...

We did get some bad news from the neurologist on Tuesday. Three of the blood tests that OHSU had done over a month ago were never sent in. Dr. Konkol, the neurologist had them triple check on their status and found them overlooked and lost in their system somewhere. I was very frustrated, since we had to get her blood drawn again two days in a row for the amount they needed to resend those tests. They have all been sent now, I called, and we will get 3 of the results back the week of June 22nd, and the 4th we will get in the beginning of July. Dr. Konkol also discussed some possibilities with us, which are not very pleasant to say the least. We will wait for the tests to come back before we worry ourselves sick. We have better things to worry about, like whether she's getting enough kisses...

Thanks to everyone for being so supportive. We've needed it! Next on our agenda this month is the neurometabolic appointment, Genetic appt., GI appt., another EEG, more Chiropractor visits, and we are scheduling an ERG with the eye doctor. The ERG is like the EEG, but for the eyes, for signs of visual stimulation I guess. We will hold off on the ERG till she is a little older and more developed. In the meantime she is still eating, sleeping, and making dirty diapers. She also smiles, makes lots of noises, and is starting to roll over from her back to her stomach. Also, she is scooting on her back all over, she seems very strong aside from her head control. She's just not a big fan of tummy time. I'll try to write soon. Love, Amber

Here is an episode so that you have a better idea of what we are dealing with. I'm sorry if it is a little disturbing, but just in case you want to know this is a small one we taped. She is probably 3 months old here.

Well, I'm sorry it's taken me so long to post another blog. We have had a few appointments since the last time I blogged. However, I really have nothing to report except that we had a fun weekend away at the lake and Sydney seemed to have a good weekend, the best she's had in a long time. We hoped that she was turning a corner, but yesterday evening was pretty tough on her as well as this morning. We are continuing to see the chiropractor and now we are adding the naturopath to the list. We see her tomorrow. I just keep following suggestions that sound promising and hope that something makes Sydney feel better. Yesterday, I had someone ask me, "if I had considered that she is having gas pains and bicycled her legs." I wanted to tell her that this child has peddled more miles than Lance Armstrong, but I understand she was trying to help. I really wish she was right, that would be great. Another test came back negative for organic acids. We will be doing some work with the metabolic team at OHSU soon, as well as the GI specialists, neurologist, and geneticists. I'll be keeping you posted. Thanks for all your support. Love, Amber

Here is a video when she was a month old before the episodes started.