Kellan's awakening

So it's been almost 2 weeks since we've started weaning Kellan off his anti-seizure med, and the difference in him is amazing! He is AWAKE so much more, more ALERT when he's awake, SMILES frequently-several times a day, and COOING!! It's so nice to see his personality coming through. I admit I get a little weepy every time he gives me a big smile! He is so sweet! And he is still sleeping his 7-9 hours at night, which I hear is fairly common with Ds. Christmas night he had an 'episode' that lasted about 2 hours. I got some pretty good video of it. We sort of discovered that it seems like when he starts the head tilt we can almost elicit the seizure-like activity. He had the head tilt again yesterday and this am, but we let him be tilted, didn't try to straighten him, and it passed and he relaxed quickly. I had called the pediatrician on call Fri. night, who happened to be the one we went in to originally the first time this happened, on the off chance she thought we could come get an EEG in a timely manner. She didn't think that would happen but she wanted to call Denver to see if they wanted to re-load him on the seizure med. I told her we didn't want to do that at this point, and she agreed that was ok. She was going to see today if we could put a plan in place so that we could bring him in when he starts having one to get an EEG during it. We'll see what happens with that. I am still 95% convinced he has BPT, I just wish we could get an EEG to prove they aren't seizures, or are, if that's the case. I did find a doctor in Boston that possibly has some experience with BPT and emailed him. If I don't hear back from him I just might schedule an appt with him and catch a plane to Boston!

Christmas was very nice here. Justin's family was here, cousin and fam from WI, parents, grandparents, and my mom, dad, sister and niece all came for dinner-21 in all! I only had to do the turkeys, everyone else pitched in on the rest! It was a wonderful dinner and so nice to spend time with family we don't see very often. The really nice thing for me was that every time Kellan was hungry he and I could escape to the bedroom for some peace and quiet!

Today was my first day back at work. 12 weeks sure flys by!! I missed Kellan, but thankfully Justin was off so he brought him up at lunch for me to snuggle!

I hope everyone had a wonderful Christmas!!

One last thing-Kellan has taken to sucking his thumb the past couple weeks too!! It's sooo cute, but I really don't want him doing it!

Kellan having his EEG.

Back from Denver

Wow! What a trip to Denver! Kellan and I flew out Sunday night after his Baptism, which went great! I never realized how hard it is to fly alone with an infant! Thanks to my new friend Shannon's husband though, he was also on the flight and helped me! We got into Denver around 6:15 and my friend Kyle-Anne and her husband picked us up from the airport. The first thing she told me was that she cancelled her trip to Billings the next day so she could help us get to our appt, etc! How thankful was I!! Monday am we got to Denver Children's at 8:30 for Kellan's 9 am EEG. When he woke that morning he was doing the posturing with his head that was the questionable seizure activity, and I got a pretty good video of it on my cell phone. Of course he didn't do it during the EEG! He hated the whole process of attaching the electrodes (30 some of them!) and cried the whole time, which he NEVER cries! He was hungry and tired, and I finally was able to feed him but couldn't hold him, and he only ate about an ounce and fell asleep.
We got to the neuro office and he ate a little more, then puked on me, quite a bit. You'll see why I mention this later. We saw the neuro nurse practioner first and she spent about an hour with us, taking history and then examining Kellan. During the exam he again began to posture, but again was awake, alert and not obviously seizing. He did it for quite a while with her in the room. Then the doctor came in with the NP and kind of did the same thing-listened to the NP tell her the history, etc. They had had a epileptologist look at his EEG, and he said it was neither normal nor abnormal! What??!! How the heck does that happen? No seizure activity, however, so that's good. I did tell her how he has rolled several time, and she asked if he did it while arching his back during the posturing, which I told her no but she maybe didn't believe me. He proved it to her by rolling from his back to tummy on the exam table! She was very impressed with how strong he is but did admit that he is still low tone and delayed. I told her he sleeps 18-20 hours per day and I believe that is partly why he is so delayed, he's not awake long enought to develop and gain strength. I believe that his sleepiness is may be partly due to the phenobarb. So we talk about reflux and Sandofer's syndrome, which is commonly mistaken for seizures, and she brings up a somewhat new possibility-Paroxysmal Torticollis (see my favorite links). I haven't had a chance to look much up with it yet, but Justin did and says some things are very familiar. The doc says they associate this with migraines in infants. Obviously, they don't know when a baby has a headache, but they do know that small children get vertigo when they get migraines and sometimes will cock their head to either side, no preference, to alleviate the pain and or vertigo. The doc asked if anyone has migraines in the family, and yes, many do, me included. Vomiting also goes along with this, and Kellan will frequently "spit up", but not very often really "throw up". Yesterday he did several times. He also postured most of the morning. Related? I don't know. The doc did watch the video I tookl earlier and she that made her lean farther away from seizures. So after all of the doc's exam, she decided she wanted to do a 4 hour EEG, to see if we could catch these episodes and rule out seizures. And if he didn't do any of it during this EEG, they would want us to come back for a 3 DAY EEG!! She said he makes a good case for all the above, so we need to try to rule out the worst. So Kyle-Anne got to run us to a whole different hospital for the EEG, which thankfully was close to her house so she could go home while we were there. OF COURSE, he did none of the posturing the ENTIRE 4 hours!! He did do some of the smaller things we have noticed, stiffening his arm, etc. The tech told me he was having some weird electrical activity, especially when he was nursing and falling asleep, but not seizures.
After all that, Kyle-Anne took us back to her house and made a very nice dinner, then we headed back to the airport. The flight home was good-the airplane was full and we were in a middle seat between a large woman whose butt was partially in my seat, and a young-ish guy. Kellan was hungry and needed to nurse and I'm thinking my boob is going to be on one of these twos lap! The guy agreed to trade me places but I told him I'd try to get the flight attendant to move me first. They did, we got a whole 3 seats to ourselves in the back of the plane!! By the time we got home it was 11 pm, I was exhausted and had a headache from hell. My mom was here and helped me feed Kellan and stuff before she went home. AAhhh-my nice warm bed!
So this afternoon Amanda, the nurse pract., called with EEG results. Again, she had the epileptologist look at it. Again no seizures, even when he did the arm thing. But he does have epileptiform waves-electrical activity that is not normal and puts a person at higher risk for having seizures, but does not necessarily mean they WILL have them. In patients with these waves they do not medicate, they wait and see what happens. This other doc recommended weaning him slowly off the phenobarb (YEA) and see what happens. I honestly would have probably taken him off it even if they hadn't given the OK, but I'm sure glad they did! It will take 3 weeks to wean him, but I'm so happy we can! Now if he has the big episodes of posturing before Jan. 7, then they will set us up for a 3 day EEG when we go back to Denver for our PT appt. Let's hope not. I can't imagine doing that!
Let me just say the NP and doc there are amazing! Very thorough, attentive, compassionate. I wish I would have had the afternoon to explore the hospital and check out the Special Care clinic-the Down syndrome clinic, but there's always January! From what I saw of the hospital, it was great-very colorful and kid oriented, of course. I highly recommend their services if anyone ever needs it. From the valet to the receptionists to the doctors, very exceptional.
I think that about covers it. We will see about working Kellan up for reflux, or just trying zantac when he stops the phenobarb. I hope everyone is well and ready for Christmas! My kids are very excited, esp because their great-grandparents and cousins on Justin's side are coming!

Trip to Denver

Kellan has an appt with the pediatric neurologist Dec 14 in Denver, with an EEG first. I had Justin call and verify the date and times, just to be sure! Kellan and I are flying down on Sunday. I have a friend who lives right in Aurora so she is very kindly picking us up from the airport and letting us stay the night with her. Hopefully Justin will be able to work something out to be able to be there too, we'll see. Kellan is also being baptized on the 13th, with my cousin Wendy and her husband Dave as Godparents.

I am also trying to prepare for Christmas. Shelby REALLY wants a Nintendo DS. I explained to her that they are very expensive and we'd have to see, and she went to her room and gathered up all her money to give to me to use-$17.62!! She was so cute!! I did a little shopping tonight. I found on another mom's blog a list of good toys for baby's with Ds, so I ordered some things off the internet, such an easier way to shop! Justin is gone this week, then home next and then gone again for a week, so it makes shopping time fairly sparse.

Kellan weighed in at 8 lbs 5 oz at his appt on Tues! He got 3 shots, which covered all but 3 of the 2 month recommendation. I opted to wait on the polio, hep B and rotavirus. He'll possibly get the polio and rota at his visit next month.

We got our Christmas tree yesterday. The kids are very excited to decorate it, so we'll start tonight. It's not as much fun without Justin around, seems empty. He got to spend a few days in sunny Key West. He's going to miss both of our work Christmas parties, but will be here for Tobin's Christmas program so that's good.

Check out Kellan's hair in the one pic-it is so curly right after it's washed!

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.

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!

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!

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.

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.

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.

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.

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!

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.

Kellan Michael Schye. Born October 2, 2009 weighing 5 lbs 13 oz and measuring 18 inches. Being the final addition, he rounded out our family at 2 girls, 2 boys. Our joy was somewhat overshadowed by my suspicion that he possibly had Down syndrome, which was confirmed 7 days later. The diagnosis didn't make us any less happy to have him, just made us worry about things we never thought we'd have to worry about-heart defects, intestinal problems, and a whole host of other concerns that go along with having a baby with Trisomy 21, Down syndrome. For those that don't know, Down syndrome occurs when there are 3 copies of the 21st chromosome instead of just 2 like there should be, for what reason is unknown, although there are several theories. I won't go into too much detail about Down syndrome itself, there are lots of great websites you can visit for that, like http://www.ndss.org/, my fav. My reason for creating this blog is partially for keeping family and friends updated on Kellan's progress, but mainly for myself, to keep track of things, like journaling, and to give myself an outlet.
At the present moment, my little peanut is demanding my attention so I shall continue later!