Thursday, December 3, 2009

Christian's swallow study

It is hard to believe that it is already December. I don't seem to be updating this blog as regularly as I thought I would. It really seems like the kids just started school, and we had conferences. I cannot believe that Christmas is only 22 days away. I am so excited to celebrate the birth of our savior and be surrounded by our family. We have our tree up and all the decorations on it.
Christian still has what we have been calling "noisy breathing". He has coughing fits every morning when he wakes up. If you didn't know better you would think it was an old man who has smoked for 30 years when you hear him cough. (and there is NO SMOKING around him ever)
We went and saw a GI person a couple of weeks ago who scheduled a swallow study. This is because he spits up often and food regularly comes out his nose. She also said it would be a good idea to get a baseline of what the anatomy in his throat looks like. She could feel the rattling of his breathing when she put her finger on the side of his throat. We had the swallow study on Tuesday morning. They put barium in his food and then took x-rays (kind of) while I was feeding him to see how the food was getting from his mouth down his esophogus.
His food was going down his throat past his esophagus and then coming back up; then when Christian would suck his thumb he pushed the food back down. They did see some of the food going up his nasal cavity also which explains food coming out his nose. During the solids the food was very slow going down and they only saw one push towards the bottom. The tech said that there are usually three pushes to move the food along and his food seems to stay in his esophagus longer and takes a longer period of time to move downward. More like gravity is moving it. She said that this is probably why we see him spitting up an hour later and also why he sucks his thumb as it helps him to swallow. His thumb sucking is for a very functional purpose. Man, our kid is smart!! :) This was all with solids. When we gave him a bottle everything moved quicker and nothing was coming back up. So the issue is with solid foods and "thicker" foods and not with liquid.
We don't know if this is part of his noisy breathing, but this seems to be part of the puzzle. I am expecting a call from the GI dr to schedule an appointment to go over the test more and see what/where we need to go from here. We also have a follow up appointment with the ENT in a couple of weeks. I am not sure what will happen here since last time he was put on steroids for having inflammation around the vocal box and sent home for 2 months. I think I am going to have to be more pushy with them as the steroids were only for 10 days and we knew beforehand that they wouldn't do any good. Christian has also had 2 ear infections now in the past couple of months. So we shall see....

Monday, October 19, 2009

Christian's SB clinic


Christian had SB clinic on the 13th. Earlier in the week the clinic had called and asked us to be there at 9:00 and I told them it wasn't possible so they left our appointment at 10:00 am like I had scheduled. We arrived at 10:20 after a little delay in getting the older kids off to school. This seemed to work to our advantage because all of our appointments were waiting for us instead of us waiting for them.
We shuffled through physical therapy and nutrition. We were in this tiny little room with the PT and nutritionist (with one student). The physical therapist, Joy, said he looks great. She noticed how Christian's right leg turns outward and something about his toes. I still don't quite understand the toe thing, but Dr Morcuende has noticed it too. I have exercises for his toes and to help stretch his legs out. So basically it was an overview for Charlie and I with PT and nutrition because our pediatrician helps with feeding, etc and Heartland AEA PT comes out every other week and works with Christian.
Next we went back to the waiting room where I got a chance to feed Christian some lunch (it was about 11:30 or so). No sooner than Charlie went to the bathroom and Christian finished did we get called back again for medical. (This was FAST)
We went over everything with a student and then Dr O'Brien came in to talk with us and assess Christian. (UIHC is a teaching hospital so there are always lots of extra people, students, and helpers.) I got to ask the questions that I have been wanting to ask neuro for months but always forget at our appointments. I asked about tethered cord, arnold chiari and symptoms, constipation, his legs, the level of SB, functioning.
Dr O'Brien is a wealth of information and a specialist in SB. She is just awesome!

When she walked in, she started moving Christian's feet all around and just watching them. This was awesome for us because no one else has done this before. She said that he appears to be around S1-S2 with a little more function on the right side. He will probably need ankle braces to help stabalize him when he is walking. She said it will be soon as he is doing so well mobility wise. Christian will probably always have bladder and bowel issues and we may have problems with continence when the time comes. If Christian's cord was tethered when he was born the neuro surg would have fixed it. She also told us symptoms to look out for if the cord happens to tether. (those of which I cannot bring to my thoughts to type right now) When I asked about the Arnold Chiari malformation is when it got interesting. Dr O'Brien and the student said that they hadn't read anything about Christian having it in the surgeon's notes but, instead of just saying that and letting it go, she pulled up Christian's MRI records to check. Christian does have the Arnold Chiari malformation but it was worded all medical like so that is why we didn't know. We are guessing that the neuro surg told us this in medical terms and we didn't understand before. Dr O'Brien said that since Christian has mild symptoms with his breathing sounds and swallowing that they usually do NOT get any worse. It seems that his sucking his thumb after almost every bite MAY be to help him swallow, which can be caused form the AC. We are also wondering if the AC may be causing his "weazing". I really don't have a word for how he sounds. Almost like an old man who smoked his whole life excecpt NO ONE smokes around him.

We learned all of this in a 3 hour period and were happy with the information we received. It's almost as if we go to all of the other dr's then go see Dr O'Brien so she can interpret everything into SB related and explain it so much better so that we can understand.

On another note:
We went to the ENT for Christian on the 9th and the doctor found that Christian has swelling around his vocal cords and at the time had double ear infection. He was put on antibiotics for the infectio (we are done with them now) and prednisone to see if the swelling would go down. We follow up with the ENT in a month. Charlie and I are skeptical if the prednisone would help. Christian is still weasy after being off of the medication.
We also go to see a GI doctor in November about the weasing and spit up, swallowing, etc.

That's all for now.... I think.....

Sunday, October 4, 2009

Christian's Ortho visit

We went to see Dr Morcuende for Christian's orthopedic appointment last week, 9/30. Christian, Caleb and I left right after we took the kids to school. We spent more time trying to find a spot to park in the U of I parking ramp then with the dr. I guess this is a good thing, but after driving for 2 hours we were only there for less than a half of an hour; including walking to and from the office.
Dr Morcuende seemed to be waiting for us when we got there. It was really nice being that last time we waited for him for over two hours. He looked at Christian's legs, said they looked good.
I asked him about how Christian's left leg seems to turn outwards no matter what I do. The doctor showed me a couple of exercises to work with him and said that we will wait until Christian is starting to try to walk and move around more to assess if we need to do bracing. He is hoping that the leg will turn itself; I just don't think it will though. He did say that Christian will need high top shoes to support his ankle.
That's really about it. In came the doctor and about 6 other white coats all at once, and they were all gone within 5 minutes.
Caleb and I looked at eachother, and I said "lets go". He didn't even get to play with his toy that I brought him to play with or nothing. So we made our way to McDonald's in Cedar Falls before trecking back home again to pick my daycare boy up from school at 2:15. We made it with about 7-10 mins to spare!!!

that's all for now....

Tuesday, September 15, 2009

Christian's urology appointment




Christian got to go with Daddy to have an ultrasound and see Dr Cooper (urology) yesterday at UIHC. Charlie got the honors of taking him. He chose driving all day instead of taking kids to and from school, etc.

Everything went great! Christian did really well and had a couple little naps throughout the day in his stroller.

Christian weighs 17 lbs 15 oz and is 25 inches. Everything looked good on the ultrasound. The bladder and kidneys look great. The bladder wall has had no change but hasn't thickened any more. We will continue with the small dose of ditropan to help the bladder. We also are continuing with the miralax. Christian still has what the doctors call a hydrocele (hydro seal). We are just watching to see if it will correct itself. If after he is one year old and it is not gone, then we will opt for surgery. The general surgeon here in Des Moines wanted to do surgery a few months ago and had called it a hernia but our urologist has told us to wait and see. The urologist doesn't call it a hernia. Here is a link for what hydrocele is: https://www.google.com/health/ref/Hydrocele

The doctor said to keep doing what we are doing and go back in 4 months. The doctor doesn't have an appointment for 6 months so it will be more like six months which is fine with us. If we have any problems we will call. :)

I hope we get as good as news when we go to see ortho on the 30th.

that's all for now...

Wednesday, September 9, 2009

Wedding weekend in KC






Our labor day weekend was spent in Kansas City (MO and KS) where my sister in law and her fiancee live. It was their wedding weekend! This was also our vacation for the summer.
Charlie and I were up until about midnight Friday night getting things ready, packing and cleaning the house. We were trying to leave the house by 8am Saturday morning. We got on the road about 8:30 am and arrived at our destination a few (long) hours later. During the ride the kids played a few games, colored, and I even made lunch on my lap (pb & j).

Our hotel was very nice. One could easily feel out of place with 4 kids and such a nice hotel. The majority of family all stayed at the Courtyard by Marriott at the Plaza so that is where we stayed. Our room was very nice with 2 queen size beds and a desk. We brought along the pack and play for Christian which fit very nicely next to one of the window's (there were 3). The tv was nice flat screen tv that I wish I could put in my bedroom. A fridge and micro were also in the room which was nice so that I could empty out our coolers. The pool was outdoors and whirlpool was indoors. The pool overlooked the parking lot which I thought was weird but it worked.

I had no idea what the plaza was before we arrived and now have learned that it is a 15 block area of stores and shops. Despite there being a ton of things to do around us, our weekend was full of wedding events so we did not do any site seeing or wondering.

Saturday afternoon was the wedding rehearsal. Maria and Colton both were part of the wedding party. Ria was the flower girl and Colton was the ring bearer. Ria's eldest biological brother was the junior groomsman. The three of them were just adorable in their tuxes and dress.
After the rehearsal we went back to the hotel to relax for a little bit. (During our downtime we took the opportunity to try to calm the kids so that they wouldn't get more overwhelmed than they already were. We probably could have walked around the shops or whatnot but if you know my kids you know that would have been pure disaster without preperation.)

The rehearsal dinner was at a park about 20 mins away from our hotel. Sara and Mitchell did a great job showing everyone a bit of KC and incorporating it into their dinner. My favorite part was the Fritz orange soda. We had a great time meeting Mitchell's family and letting the kids blow off some steam. We ended up having to leave before we were ready as we soon found out that there were not any bathrooms at this park and 2 of the 4 kids had to go. (and kids aren't really able to hold it when they say they have to go)

Sunday morning Ria and I went over to Sopra; the salon where Sara works. All of the girls in the wedding were having their hair done. The bride, Sara, was even doing hair. Sara did Ria's hair for her and it was so beautiful. (I will post pictures when I can get them off my camera) Girl time was nice. I learned a lot about curling irons, makeup, etc not that I will use it as I am not really a girly girl.

Once the kids were all ready and at the church we did a lot of waiting as the ceremony wasn't until 4:30 yet we needed to be there for pictures, etc. Anyone who has been apart of a wedding knows how many pictures there are before the ceremony! Colton and Ria did great walking down the aisle and sitting through the service. Ria did awesome tossing the flower petals. After the ceremony was over Ria and Colton were to walk out right after the last couple; before Ria walked out she looked up at everyone and dumped her basket upside down spilling the flowers all over, grinned and then started walking. I think it was her way of saying "all done!" It was very funny. Even more so that after we walked out and waved the newlyweds off that she had to pick up all of the flowers. HEHE. Colton and Caleb helped too.

The reception was the most fun for the kids I think. Sara did an awesome job with details and everything. She had bags made up for the kids with coloring books, colors, little slinkies, stickers, and bubbles. It was a hit for a little bit and then they started fighting. The best part was the music and all of the kids had a blast dancing their hineys off on the dance floor. Caleb loved the dollar dance and was asking everyone for dollars to dance with Auntie Sara.
After an exhausting day we walked back to the hotel about 11pm and crashed!





Overall we had a good labor day weekend. Some things could have been better. I tend to dwell on the bad and not the good, so I thought I would write down the good so that when I am in a slump I can come back and remember. :)

that's all for now....

Saturday, August 22, 2009

Our day at the Iowa State Fair

We had a great day at the Iowa State Fair yesterday. 9 hours and several dollar bills later we arrived home and were exhausted!
We got to the fair at 9am and the first thing we did was get a corn dog for all of us while we looked at a map and laid out a plan of attack for what we wanted to do. Originally Charlie and I only planned on being there for 3-4 hours.

After our corn dog we ventured onto the building with all of the baby animals. There were baby chicks, ducks, pigs, cows, goats, sheep. The kids got to see a couple baby chicks coming out of their shells. While there we also got to see a magic show about farmers and where all sorts of different products come from. The kids learned that even lipstick has an ingredient in it that comes from a farm. "Thank a farmer" was the motto for the kids to learn.

We rode the tram around and visited the Agricultural building where we waited in line to see the ice sculptures and the butter sculptures. It seemed that the kids were most impressed with the butter TV. The kids got to see a cowboy doing all sorts of tricks. (The Rhinestone Roper) He had rope tricks, gun tricks and even had two horses that did tricks. One of the horses layed down upside down and let the cowboy sit on top of him. This was a great show of trust and something that I have never seen a horse do. At the end of the show it started raining so we ducked inside for a little while and toured the second floor of the Agricultural building.

We had quite a rain shower the first part of the afternoon so we ducked into the Steer N Stein and were fortunate to find a table rather quickly. We took this opportunity to get lunch, relax our feet and give Christian some time outside of the stroller.

Two of the best parts of our day were "Little hands on the farm" and the "Butterfly Garden". Inside little hands on the farm; the kids wore farmer aprons and a farmer hat. They walked around weaving through the path "harvesting" crops and picking apples from a tree. After all their harvesting they used their corn to fuel up their tractor to ride around to the farmers market to sell their crops back. (even though everything was pretend it was just great to see the kids learning all about farming) The kids earned a dollar that they could spend at the farmers market building to buy 1 item. Caleb chose a cookie and Colton and Ria both got something to drink. They also got to keep their hat as a souveniour.
The butterfly garden was absolutely amazing! I have never seen so many butterflies in my life. The butterflies would land right on you anywhere (your arm, leg, back, shoulder, etc) and just hang out while you watched them. Several butterflies landed on Christian's stroller and one even landed on his blanket. Butterflies are beatiful creatures and even more beautiful up close to enjoy.

The last part of our day we spent going through the Varied Industries Building and checking out the livestock. The kids got to see IPTV's Clifford and give him hugs and "hi fives" We also got our Iowa State Football posters and a yard stick from the University of Iowa (they were all out of posters). We saw the horses, sheep, goats and lastly the big bull. Colton and Ria got to milk a cow. They were both tickled about milking a real cow! It was pretty funny when Colton said "I squirted milk on the cow's leg".

Yesterday was probably one of the best days that I have ever had at the Iowa State Fair and very memoriable for our children. That says a lot since I grew up going to the fair every year and spent several years being there for all 10 days (even working at the fair). I just wish I would have remembered my camera :( I got a few pictures on our cell phone so I will try to post them when I can.

Saturday, August 8, 2009

Christian's high chair


After using the bouncy seat as a chair to eat in for the past month, I decided that it was time to get the high chair down. Christian has learned that he can put his fingers in his mouth when he is eating and then touches everything. Therefore; the bouncy seat was getting filthy and it is cloth. Thursday night my sister came over and helped me get the high chair down out of the rafters. Man! Was it dirty. I hosed it off and washed it and now it is ready for Christian. The chair is over seven years old now since we got it when we had Colton so it is still in pretty good shape.
Our little boy is getting so big! He ate almost all of his bananas and some sweet potatoes this afternoon. Of course, the picture is before he ate anything!

Monday, August 3, 2009

Pictures of the day

Caleb and Ria playing in the pool
Christian watching us in the pool. I was trying to keep him so the sun wasn't on him although the umbrella kept falling over.

Mommy, Colton, Caleb and Ria playing in the pool


Sunday, August 2, 2009

New pictures....

Christian's Mickey outfit from the Reed's
The kids at Gray's Lake on Sat watching the Dragon Boat Races.

Sunday morning

This week there is only one service at church which isn't until 10:30. I am fortunate that my kids are all being good for right now!!! (knock on wood that it will continue) We got up early, all had baths and french toast for breakfast. The kids have all been playing nicely for about an hour.
Christian had his first bath sitting up this morning. He still cannot sit very well. He leaned forward against the chair which supported him. I think he liked the sitting position for his bath though as he could see a lot more this way.

Christian seems to be liking his solids although his system still isn't too sure about them. So far he has had baby cereal, greenbeans, carrots, peaches, pears, and bananas. He seems to like the pears the best and ate the whole cup the first time he had them. Being on almost straight formula and now adding solids is a big change. I am trying to figure out how to regulate him better with the miralax having changed the dose almost every three days because his output is almost like tar. He always was the opposite being on breastmilk and the miralax was working great with the dose we were on so this is a new hurdle for us.

Daddy has been out of town the past week and is going to be gone this next week too. He had school in Chicago and now this week is in Columbus, OH to put to work what he learned at school. It has been a really long week and I keep looking for things to do with the kids to pass our time. This week we made two paper chains. One counting down to Ria's adoption day and the other counting down to the first day of school for Caleb. Caleb is excited to be starting preschool. He seems to be a little aprehensive also about leaving me since he has been home with me exclusively since March.

Well, I better get moving so we can get out the door for church.
that's all for now...

Thursday, July 23, 2009

kids update....

Well, I am not doing very good at this blog thing. I thought that I would be more into it, but it seems that we get too busy with our day that I just don't get it done.

Christian had his six month check up on the 13th and got his routine shots that kids get. Dr Salow said he looks great and that we don't need to come back until his 9 month check up unless something comes up. We will still have specialist appts at UIHC the end of Sept and Oct but they are not all set up yet.
We have started solids and the first food that we are trying is green beans. Christian still doesn't seem to know what to do with it all, but it is fun watching him try to grab the spoon from me and put it in his mouth.

Colton and Ria had golf camp the beginning of July and really had a good time learning about how golf is played and getting to see some of their friends at the same time. Then the next week we had Fun Fest at church which is like vacation bible school. It was a great time and I believe that the kids learned a lot. Colton, Ria, Lily and Ricardo all seemed to enjoy themselves. It was fun that Ricardo could attend with us and such a good coincidence that he was down here during this week. We picked Lily up and took her each morning and she seemed to have fun with her friends. Caleb spent the majority of the time in the nursery with me because he couldn't sit still and focus on what the preschoolers were doing. His friend, Jessica, helped with him a lot, so that he could still participate in song time, snack and recreation. We are hoping to have Caleb on some meds to help him calm down by the time school starts.

We found a new park for us to go to which is really nice. The park on 4th and Vine in WDM is really nice and different for the kids to play at. It also has a wading pool and FREE lunches for the kids M-F so it is great! Yesterday was the first day that we went; the kids had lunch and then played in the wading pool for awhile. They had a good time!

Ria will be adopted here in August. The date that our attorney has scheduled is August 11th at 1:15 pm at the Polk County Courthouse. Grandma and Grandpas are invited to come witness as this is an important part of our lives and the day that Ria will be officially part of our family (both Davis and Sullivan). We want to do something to celebrate but have not worked out the details yet. For now we are thinking maybe just having an ice cream social. Something inexpensive but memoriable for Ria. If you have any ideas, please let me know.

That's all for now.....

Tuesday, June 9, 2009

Christian's UIHC visit 6/8

Christian was 5 months old yesterday. We got to spend the day at UIHC for doctor's visits. Charlie, Colton, Christian and I all made the trip to Iowa City. Caleb and Ria spent the day with Grandma Lori. We had a kidney/bladder ultrasound, hip x ray, urology dr visit and orthopedic dr visit.

Christian's kidney's look good, his bladder wall is thicker than Dr Cooper says it should be. He said this is probably because Christian works so hard to go so the muscle is building up. I asked about the thickness compared to the last testing and he said it is about the same. We are to go back on the ditropan. It is a low dose (1 mL twice a day) so he said that we shouldn't have to cath for right now. Christian does so good 'going' on his own. During the ultrasound his bladder was empty or close to it and he had just ate an hour before the test.
We asked about a different solution to the consitpation instead of the KERO syrup since it is so sugary. We are going to start on miralax which they said is completely safe to use for long periods of time. This is a powder that we will mix and then give him with his milk.
We also asked about the groin hernia and Dr Cooper gave us the pros and cons to doing the surgery now or waiting until Christian is a little older. Christian has the groin hernia on one side and the dr's also said he has a hydroseal which is fluid that is getting down into the scrotum. Charlie and I both agree that the pro's outway the cons as one of the cons is that there is always a chance that a piece of the bowel could get caught down in the hernia and die and then it would be emergency surgery. We are going to schedule the surgery here in Des Moines so that we will be close to home. I had a consult with the surgeon almost a month ago but wanted to get Dr Cooper's take before we went forward.

Christian's hips also look great! The doctor was pretty backed up, our appt was at 2:30 but we didn't get seen until 4:30 which was quite a long wait. (gave me a change to pump, call mom and get a breathe of fresh air.) Dr Morcuende said that Christian looks great and that we will continue to monitor him. I asked about his right leg that is turned outward all the time and he said that hopefully with continued exercise, etc it will correct itself. If not, we will do a series of bracing to help it. For now, he is not concerned though.

We go back in 3-4 months. As of right now, none of our appts are scheduled as I am going to try to coordinate as many as we can on the same day (neuro, ortho, and uro). Although it makes for a long day, hopefully we can get at least two appts in.

Tuesday, May 26, 2009

Mom's 50th Birthday/Memorial Day


Yesterday was my mom's 50th birthday. Concidentally, it was also Memorial Day. This seemed to be a good day as we could remember our troops and also have double reason to celebrate.


We surprised Mom with a birthday party and everyone came over to celebrate with cake and ice cream. I baked a german chocolate cake and all the kids delved into the ice cream. Even the dogs thought they needed some too.


The kids enjoyed the swing set and Masen showed the younger kids how to stand on the top (which we quickly asked him not to). Austen hung out in the fort and tried to stay away from the other kids but Ria and Caleb took to him and would not let him be by himself. This was all to funny because Austen would rather be by himself.





Later Jason, Carrie and kids came over and we grilled out. To bad that it started raining so the guys brought the outside table into the sunroom to eat. Much to say, the siding did not get put up on the house since it was raining. We still made the most of it and it seemed that the kids had fun playing together, when they weren't arguing about 'mine, mine mine'. It was almost comical watching Caleb and Tyson eating their corn and their conversation. I tried to getit in video but it didn't quite work out.

video
That's all for now....

Saturday, May 16, 2009

Our family bio

We are a family of six which includes myself, my husband, and our four children. We have three boys; Colton, Caleb and Christian. Colton will be seven in two weeks, Caleb is four, and Christian is four months. We have one girl; Maria who we call Ria for a nickname. Ria is 6.

Colton and Ria are seven months apart. The boys are our biological children and we are in the process of adopting Ria. Ria has lived with us since September 2007 when she was removed from an unsafe situation.

We live near Des Moines in Norwalk where I grew up. We love the small town atmosphere of Norwalk and the fact that everywhere we go we usually know someone. Our community is a caring community and we love that.

Colton is at the end of first grade. He has been in a looping class the past two years and we just adore his teacher. I hope that his second grade teacher is just as wonderful.

Caleb will be starting preschool in the fall and he is looking forward to that. We have been working on the alphabet and writing letters at home so hopefully this will help him once school starts.

Ria is at the end of kindergarten. She started the year in the DSM school district and in January we transferred her to Norwalk and she has been thriving in her new class which is about half the size.

Christian is a growing baby boy. He does new things everyday and it is always fulfilling to see him smile and giggle. Christian was born with spina bifida which we knew about during my pregnancy. He is a miracle baby! The Lord has done great work in him. We only have a few issues due to his spina bifida right now which are workable.

Charlie is the working one of the family. He is a telephone technician at a small company based in Waukee. He is helping to get the telephone side of the business going and hopefully it will break out and create a long term career for him with this employer.

I, Sarah, am a stay at home mom. I was a working mother until Christian was born in Jan 2009. At this time we decided that it would be best for one of us to stay home with the kids. Between the four kids we usually have at least one appointment a week which would require getting off work early, etc. It is not really practical to have to take time off of work every single week. I am enjoying staying home with the kids. It is very challenging at times, but rewarding too.

thats all for now...