Friday, November 27, 2009

Friends

My Holland, My Italy#links

I found this on a fellow Ds mom's blog, and it really touched me. Follow the link to read.

Tuesday, November 24, 2009

7 lbs 15oz!!

Wow! Kellan must be gettin' some good milk! I hope it is coming off me ounce for ounce that is going on him!! I should hear from Denver tomorrow about getting him in to a neurologist. I have spoken on the phone twice with a gal who has a 3 month old baby girl with DS (we are going to meet them tomorrow!) and they had to go to Denver for the baby (Piper) to have open heart surgery. Shannon-the mom-told me about a physical therapist there that literally wrote the book on gross motor and DS. They are trying to start a DS clinic there and recruited this gal to help get things started. Sooo...now I'm trying to get Kellan in to see her too! I've always thought you should go to the best! Hopefully he can see a speech therapist also. I know it seems crazy to see all these therapists when he does nothing but eat and sleep and poop, but this video we watched talked about how you have to help kiddos with Downs learn things the right way, like speaking that starts with cooing, eating, rolling, sitting, etc. Kellan has already mastered the rolling thing-he does both back to belly and belly to back!! We just want to make sure we stay on top of things, without going overboard, of course! And by the way-he smiled at me! Love that little guy!

Friday, November 20, 2009

no neuro appt

So I screwed up Kellan's neuro appt, it was supposed to be Thurs and I thought Fri so we showed up a day late. They said they couldn't get him in, which the doctor comes from Seattle and was flying out this afternoon, so I can't really blame them for not being able to see him. Still, it sucks. I called the pediatrician office crying and one of them called me back and said not to worry about it. She said we'd talk to Kellan's doctor on Monday and see what she wants to do. Justin is thinking he just wants to take him to Denver as soon as possible, I'm on the fence. Kellan is doing really well. His last weight was 7 lbs 5 oz. He is eating more and more, esp at night. Sometimes he'll down 5 oz! His awake times are getting more frequent and lasting longer. He smiled at me twice Thursday! Everyone else is good too. I talked to a mom who has a 3 month old daughter with Downs that lives here in Billings and we are going to meet Monday. I'm looking forward to meeting her and the baby and exchanging stories/advice/whatever!

Sunday, November 15, 2009

Daddy's Home!!

After a long week of single parenting, Justin got home Sat. am, just in time to see the older 3 off for the majority of the day to birthday parties, etc. I was so excited to be "free", I headed shopping, getting a head start on my birthday!! Kellan enjoyed an afternoon of Daddy and the Griz. Kellan has had a good week-eating, sleeping and pooping! Throw in a few roll-overs, and that's his excitement! Our friends next door came over one evening and he rolled 3 or 4 times for her, until he got too tired and had enough. He is such a cute, sweet little pumpkin! 6 weeks old and he has my heart wrapped around his little finger. As busy as life is now, I can't imagine what it was like without him.

Tuesday, November 10, 2009

Another good day

Kellan had another good day today. We started working with an occupational therapist on our breast feeding issues. She was very impressed with his suck and how strong he is in general. He even rolled over again for her! He does not like tummy time! She will come again next week. We saw the pediatrician yesterday and he had gained another couple ounces. She was trying to get us in to see the pediatric neurologist next week that comes from Seattle to see patients. His schedule was full and the office here wouldn't budge on letting us in, so she called him in Seattle and asked him to squeeze us in so we wouldn't have to go to Denver. He said he was happy to! I am anxious to see what he has to say. In the meantime, we are managing through each day with Justin gone. Not exactly easy, but not too bad either.

Sunday, November 8, 2009

Home, Sweet Home

Kellan was discharged from the hospital today. He had a good night last night, we moved out of the PICU last evening, which I thought meant we'd leave the monitors behind, but no. We took them with us, but not the nurse to monitor them! So that left me to watch them, and listen to them alarm every time Kellan moved. Not a very restful night. The room we moved to was right outside the PICU and there was a window between my bed and the crib that the other baby in PICU was in. I could hear her crying off and on all night, and felt so bad for her. Her alarms went off frequently, she is a very sick little baby-11 days old. I just talked to her mom and they are flying her to Denver now. They don't know what is wrong with her. I feel so bad for them. We are so lucky to have gotten to come home with everything being OK. Kellan has been awake and alert for the last 2 hours, so nice to see his blue eyes looking around! He hasn't had any more spasms or spells or whatever it was that happened Friday. There is possibly a pediatric neurologist that comes to the specialty clinic here so we'll find out more tomorrow about that. Thank you to everyone for prayers and support. Please add Kellan's former PICU roomie to your prayers.

Saturday, November 7, 2009

Out of PICU

Kellan's MRI and EEG both came back normal, which is great news. Although now we are still left with more questions than answers, which is frustrating. The doctors here want us to go to Denver in a couple weeks to see a pediatric neurologist. I hope that will give us some answers. Kellan had a good day. He was mostly sleepy, but woke up to eat every few hours. He even christened the PICU and showed everyone what a great urine stream he has!! He is taking anti-seizure meds and will stay on them until further notice. We should get to go home tomorrow. I am not looking forward to Justin having to be gone all week for simulator training in Dallas, but he can come home quick if needed, and I'm sure everything will be fine. We have such great support here and we appreciate everyone's thoughts and prayers.

PICU and seizures

Kellan was admitted to the PICU yesterday afternoon with possible seizures. Justin and I noticed him having what looked like muscle spasms and cocking his head to the left. We took him right over to the clinic where they called an ambulance to take us to the hospital. He had an EEG of his brain then was given a loading dose of an anti-seizure med that then made him very sleepy. He had a good night, and thanks to 1 to 1 nursing, I got some sleep too! He had an MRI of his brain this am and did so well with it he didn't even need sedation, which was good. We hopefully will get both test results later this afternoon. There is no pediatric neurologist here so the EEG had to be read by one in Denver. They will also have us go to Denver in a couple weeks to see a neurologist. For now, Kellan is just real sleepy but waking to eat. Please keep him in your prayers. I will keep this updated as much as I can.

Wednesday, November 4, 2009

Kellan had his pediatrician appt yesterday and was up to 6 lbs 6 oz, 4 oz in 4 days!! YAY! Today we saw the cardiologist, and his patent ductus closed, another HUGE YAY!! the other is still a little leaky but no big deal, he never has to see the cardiologist again! He seemed very apprehensive at the cariologists office, sucking away on his paci and looking around like "what's going on? Don't poke me!" It was a painless visit. His EKG needed 15 leads put on his chest, which is tiny, so he looked funny with all that. Justin took pics so I'll post them when we get them uploaded. He was really alert when we got home, looking at his black and white toy for some time. I laid him on his stomach for some "tummy time" on the loving room floor and he rolled back over to his back!! No joke, and he was completely on his abdomen when I laid him down! He's a strong little bugger!

Monday, November 2, 2009


Our little pumpkin
The last 4 plus weeks have been extremely busy in the Schye household. It seems we are at the doctor's office twice a week. Kellan was jaundiced pretty bad at his 4 day check up, so we spent the next 24 hours almost force-feeding him to get his bowels moving and excreteing the bilirubin. He was and still is a very sleepy baby, which I have since found out is typical for babies with Downs, would have been nice to know 4 weeks ago! I thought he just was content to sleep! He had been poked for blood some 20 times in the hospital for the genetic testing so I was determined that he was not going to have to be poked every day the rest of that week so we really kept on him, making him wake up and eat every 2-3 hours. It worked, he pooped like 7 times in the next 18 hours! His poor little heels were a mess of scabbed over slits, where they had poked for blood, not to mention his ankles, hands, & arms. Kellan had been doing well breast feeding and gaining weight for the first 2 1/2 weeks or so. On October 15 he weighed 6 lbs 8 oz. I had always thought he didn't suck as well as Tobin when he was nursing, but thought since he was gaining weight all must be well. On October 26 I thought his skin on his thighs looked loose, but then thought I was just being paranoid, but then Morgan mentioned she thought his arms looked loose too. So I took him in the next day and weighed him. He had lost 11 oz! So the pediatrician had me start pumping and fortifying breast milk for him, at which time I discovered I wasn't producing enough. Babies with Down's typically have low muscle tone, which Kellan really doesn't over all, but obviously his mouth and jaw muscles are a little lacking. She wanted him to gain 3 oz by that Friday, so again we worked hard, and he was up 4 oz, with one tired momma. He sees the doctor again tomorrow so we'll see how much more he has gained, he still seems so skinny and tiny! We also see the cardiologist this week again for another echocardiogram. He had one in the hospital when he was about 18 hours old because about 50% of babies with Down's have major cardiac defects. Thankfully Kellan didn't have any major problems, just 2 minor. One is patent ductus arteriosus, which usually closes at or shortly after birth so it may have closed after the echo. If not, then he will have to have a heart cath when he's one to plug it, as long as he doesn't have complications from it sooner. The other is another opening that probably won't be closed but is not a big deal and they just leave open. Also this week Kellan will be evaluated by Early Childhood Intervention to see if he has any immediate therapy needs (which I'm hoping we can address his low muscle tone in his mouth). This will also set us up for the next 3 years. Lastly, we have Justin's birthday! It will be a busy week again. Thankfully Justin is off all week!
We are eternally grateful to all of our family and friends who have supported us through the past 4 weeks. We wouldn't have gotten to this point without you. If anyone had told me that I'd have a baby with Down syndrome and be accepting of that fact this soon, I'd have said they were crazy! It's hard to describe the emotions we have gone through, really the grief process, but there is a short essay that really says it all. Follow this link to read it, if you wish. www.our-kids.org/Archives/Holland.html. So we are in Holland, and we love Holland just as much as we loved Italy.