Thursday, January 31, 2008

My wacky brother!

It is mis-match day at St. James for my big brother. Isn't he silly?

Wednesday, January 30, 2008

My big brother ROCKS!

Thank you Kayson for making me laugh, I love hanging out with you! You are the best big brother in the world!

Thanks Papa & Nana!

Mommy and Daddy went to their Dave Ramsey - Financial Peace University class on Sunday so I got to hang out with Papa and Nana again! Thanks for taking great care of me! I love y'all!

Discovering things...

I'm growing!! (Or the bear is shrinking!)

I am my daddy's son!

The picture of me was taken last week ... my Nana brought the one of my Daddy on Sunday... uncanny!

Back in my BumGenius!

Yep, that's right, my hiney is all better! I can see clearly now the RASH is gone! I've been back in my cloth diapers for about two weeks now, and I am thrilled! Even my daddy can handle these cloth diapers. My mommy says that they are better for the environment. I don't really understand what that means, but my mommy says that I'll appreciate it someday. They are so soft and comfy, that's all I know and they come in cool colors! My bum is beautiful in my Bumgenius! I even have one made out of hemp, it's called a babybeehind and it's from Australia. We're on our way to using cloth wipes soon too, but we're waiting for the camo ones to get in stock, as for now mommy makes our wipes at home. Yesterday we were surfing the web and saw these really cool diapers too, they're flushable! Who knew!? They're called G Diapers...

Saturday, January 26, 2008

Seidenschwarz update from Tanzania!

We are back in Moshi for a couple of nights enjoying a bit of R and R. We hitched a ride with Tom and Sally Roach yesterday. They are the ELCA reps for this area and came out to our school to visit. The school also had a group of 26 folks from Nebraska for lunch--that synod heavily supports the church here in Tanzania--they are a sister synod. Technically the Lutheran Hotel here was filled, but when we arrived and told them we were from Mwika Bible College, a room was available in the Kilimanjaro wing which means the rooms overlook the mountain!! Today we went downtown, once we got out of bed, and then have been relaxing this afternoon. The battery on my watch needed to be replaced; we were sent to a store "just a few meters away" and about 45 minutes later and at least two miles, we finally found it!! *Bev says it was not that far but I think it was!! While we were stopped at a curio shop/restaurant combination, a tour group came by from Norway. We visited with the tour guide; he has climbed Mt. K. 52 times!!! Yes, Bret, when we look at the mountain each morning on the way to school, I do indeed have some memories of being up there. . . and I'm not interested in repeating them!! We have been listening to BBC and VOA--where we hear scores of soccer games between Egypt and Sudan or Tanzania and Cameroon!! We sent a message to the church last Wednesday and they said "it might get sent by Monday--if the phone is working and if the phone bill has been paid." Likewise, we wrote a letter to Margaret Ann, and when we said something about mailing it, it was as if this was an odd request "but someone was going to a nearby town at some point, and maybe they could mail it." We'll be curious to know when and if it is received!! Everyone has been mentioning the cold weather. We are quite content with the comfortable weather at the school; meanwhile here in Moshi it is warmer as we are at a much lower altitude. IF I have it correct, the Bible School is at about 7,000 feet so that is nice. Things are generally going well at the school. The challenge is to keep the electricity and the water going! It seems if one is on, the other is off . . . and sometimes both. We were without water for two days so someone mysteriously brought buckets to our guesthouse and our housekeeper managed to boil water and put meals on the table!! We are going to a Deacon Consecration at some area church tomorrow. A driver is to pick us up here at the hotel at 7:30. The service begins at 9 and there is a luncheon afterwards so we are anticipating a 3-hour service!! Kristin called last Sunday evening. The voice was very broken but we managed to catch most of what she said. Kristin, we were certainly pleased and impressed with the blog on Kouper. He looks FAT in that one picture!! We are so thankful to hear all the good, positive news. If we didn't know better, the picture with the "plug" in his eye makes him look totally normal . . . it looks like a regular eye in the picture but from what you describe it is more of a wedge extension. At any rate, keep us posted. I told Mom this morning, when we were sitting on our balcony, that things would be perfect if we just had Kouper here to hold for a few minutes!! Love Mom and Dad

Friday, January 25, 2008

So sweet!

I did great!

Well I did just fine. I knew there were going to be no problems, it's my mommy and daddy who were worried! My mommy only slept about 2 hours the night before (and daddy didn't get much sleep either), but I knew it would all be fine. The hardest part for me was that I couldn't have my mommy's milk after 3 a.m. Mommy and daddy tried to give me some really yucky pedialyte. I wasn't haven't it. We all woke up at 4 a.m. to getting ready to leave at 4:45. It was so cold and yucky outside. We arrived at University Hospital at 6 a.m. and then had to wait a little while. That was a challenge for mommy and daddy to keep my mind off of the fact that I was STARVING! They rocked me and paced the hallways and it worked a teeny tiny bit, I guess. Then they called my name and took me back to this huge area were there were lots of people waiting to have surgery. I was the only baby in the whole area and everyone wanted to take a look at me. We were escorted to a little area where there was a big bed on wheels. Then they brought be a gown... it was purple! I was hoping for something more boyish, but it worked. Then they brought be a warm blanket that was great. BUT I was still starving! They tried to give me my pacifier, normally I don't like it at all, but I tried to take it since it was all I got. Next the anesthesiologists came and met with us. Yes there were two! I guess they thought I was extra special because they brought a special one from Santa Rosa Children's hospital. She is a special doctor because she knows a lot about pediatrics, anesthesia and cardiology. She also has a 10-month old baby so she knows how to help me the best. They told mommy and daddy that because of my heart condition they wanted to take extra care of me. They explained that I would be given some medicine before they poked me for the IV, so it wouldn't hurt, YAY!! (Of course it took more than one stick!) Then Dr. Fry and Mr. Wenske came in and said that they were ready to go. Dr. Fry marked some purple letters on my face and then said she was ready. I don't know what she wrote, but it won't come off!

So at this point my mommy and daddy had to leave and the nice anesthesiologists carried me off as the other one (he was nice too) rolled my bed alongside. As soon as I was knocked out and intubated the nurse called to the waiting room and let mommy and daddy know I was doing fine. The next thing I knew I was all done and starving once again so I decided to make that known. I screamed my head off, this also helped my parents find me in the PACU (post anesthesia care unit). Then all they would feed me is that yucky pedialyte stuff again and water... but I drank a little bit, just because that's all I had. (The special anesthesiologist had to get a little mean towards the nurses because no one was getting me a bottle, thank you for that!!) I got to be in mommy's arms for a while so they could give me oxygen and monitor my heart and temperature. Then finally we all went to another room where my mommy was finally allowed to feed me!! After that I was out like a light and happy as can be.

After we left the hospital we went to my ocularist's office. He told mommy and daddy that everything went well and he was able to get my very first conformer in. It is clear and made out of plastic. There is a little handle that sticks out of my eye, you can see it in my photo above. Dr. Fry also told us that my right eye looks normal, so that's great! We have to go see Mr. Wenske (the ocularist) next week and we'll get a larger conformer. We have to go back each week for a while and then it will slow down a bit. We are so excited that we're finally on the road to get my prosthetic eye! We've got a LONG way to go, but we're going, so that's great!

Thank you everyone for your thoughts and prayers it means so much to our family!

Sunday, January 20, 2008

Set to go...

We met with the anesthesiologist at University Hospital on Thursday. He said that we should be all good to go for my procedure scheduled for Thursday, Jan. 24. He went over everything that is to happen and said that the whole procedure should take about 3 hours. He said that most likely the doctors will start an IV first just in case they need to get medicine to me quickly. I am NOT looking forward to that. Mommy asked if they could spray some medicine on my skin that would help make it numb... cross your fingers! Then next they will put a mask over my face that pumps out a medicine which will make me go to sleep. After that they will put a tube down my throat to help me breathe. After I am asleep Dr. Fry and Mr. Wenske will examine me and then hopefully if all goes well put in my first conformer. Mommy and daddy are very nervous about having me put under anesthesia, but I know it's going to be just fine. But if you could say and extra prayer or two for me, I think it might help them. I think that the hardest part will be me not being able to drink my mommy's milk two hours before the procedure. The doctor said that I could have pedialyte, I hope it tastes good! As it stands now, my surgery is scheduled for 7:30 a.m. so we should be all done around noon.

Tuesday, January 15, 2008

Cardiologist visit

We got great news from Dr. Patel yesterday! He said that he was so impressed with my progress in such a short time. When I was first born the doctors heard a loud murmur in my heart. The cause of this was from a VSD (Ventricular Septal Defect). Basically what this means is this... there are four chambers in my heart and the bottom two chambers or ventricles had a little passage way connecting them. This passage isn't supposed to be there. Because of this the blood was shunting back and forth from one side to the other. Originally the passage was 3 mm, now it has already shrunk down to 2 mm. BUT Dr. P found a second VSD, it's only 1 mm. He said that we shouldn't be concerned at all because they were so small. So I probably won't have to have surgery, yippeee!!! He also gave us the green light to be put under anesthesia for my procedure coming up on Jan. 24. The PFO (patent foramen ovale) is still present too, but he's not too concerned about that either. This is basically the same thing as a VSD but it is in the two upper chambers. So bottom line, I'm doing great!!!! In order to find out about everything they had to do and EKG and then they did an ultrasound as you can see in my pictures up above. I was such a good boy, not to toot my horn but TOOT TOOT! So now we meet with the anesthesiologist on Thursday to go over everything and then I'll be getting my first conformer on the 24! I'm on the road to getting my eye!! YAY!


Well I guess my mommy and daddy are right, I am a piggy! I went to the cardiologist yesterday and I weigh 11 lbs. 14 ozs.! That's almost double my birth weight! But I know what I'm doing because Dr. Patel (he is soooo nice!!) said that if I wasn't growing so well that he would be concerned so relax mom and dad, I've got it all under control! I already have a double chin and I'm kinda gettin' what my dad calls man boobs! But no worries I'll be stretching out before you know it! Do you see my big brother up there? I'm trying to grow fast so we can wrestle! Mommy and daddy say that I'm already growing too fast... but I can't help it ... there is fun to be had! Ohh and my brother is getting to be a pro at making me not cry... I love him!

Time with my Nana & Papa

On Sunday my mom and dad went to a class called Financial Peace University (Dave Ramsey's class you should check it out! and I got to spend time with my grandparents! Yep I got spoiled for a bit. Unfortunately they were only gone for about 30 minutes. BUT they said that they're going to do this class for 13 weeks and I get to stay with Nana and Papa! I'm so excited! Next time I'll get them to take a picture that isn't so blurry! Thank you so much Nana & Papa!

Saturday, January 12, 2008

From Tanzania, Afica...

From my papaw and pamaw (Walt & Bev Seidenschwarz)...
[Today we are back in Moshi, the major town nearest us, about an hour's drive away. Our principal had to come in today for various things, so he asked us to ride along. We went to the bank and ATM for some money are are now at the Uhuru Lutheran Guest House for a couple of hours, where we spent our first night Tuesday after arriving at the airport. We also left from here back in 1993 when we climbed Mt. Kilimanjaro. We have had some very interesting experiences at the school, both positive and negative, but we are adjusting. Power went off the first evening so had to more or less unpack by candlelight. Then the water didn't work so had to carry water to the sink, commode, etc. by bucket for the first couple of days. Things are beginning to either improve or maybe we are just willing to accept it and go on with things! We will meet our students for the first time on Monday. It looks as if we are going to have a much easier teaching load here than we did in Indonesia. No classes on Friday! And to repeat about the time, we are 9 hours ahead of you, not 8 as originally thought. (That's for central time.) We don't have any idea when we will get back here to check e-mails. We are told there is a site about 10 or 12 kilometers from the school but haven't checked it out. The roads to the school are really something to behold--about shake your teeth out! I don't see how they can be passable when the rainy season starts in a month or so. Love, Dad and Mom]

I am so glad that they made it to Africa safely. I sure do miss them holding me! When I was at their house I got so spoiled. They fought over who got to hold me first, it was great! I sure hope that these five months go by fast so I can see them again! I love you papaw & pamaw.

Friday, January 11, 2008

Another day, another doctor...

Mommy and daddy took me to San Antonio again! This time we went to a different hospital though, it was called University Hospital. We met with Dr. Fry she is the ophthalmic plastic and reconstructive surgeon who will be aiding in the process of me receiving my prosthetic eye. The first step that we'll be doing is called EUA (exam under anesthesia). This procedure will take about 2 hours and it will allow her to look inside my eye and get a closer look at everything. The ocularist Mr. Wenske will also be present during this to fit me with my first conformer. (A conformer is a plastic prosthetic, often having a 'peg' or 'stem' to allow them to be easily inserted and removed. Conformers are usually the beginning step (prior to prosthetic eyes) for children with anophthalmia and microphthalmia.) Because of my heart defects, I will have to get clearance from my cardiologist before I can be put under. We already had an appointment with Dr. Patel (my cardiologist) on Monday, Jan. 14 so we will discuss the risks with him then. We also have to meet with the anesthesiologist prior to the procedure to go over things, that will take place on Jan. 17. The surgery will take place on January 24 if all goes as planned. In about 6 months I will probably have some fat taken from my tooshy and that will be put into my eye socket. This will grow with me as I grow and it will allow the prosthetic to be positioned correctly in my eye rather than having it recessed. This process works so well because it's my own fat so there is no chance of rejection. Since I have a small eye the prosthetic will be more of a shell rather than a round traditional eye ball. It is called a scleral shell and it will go over my existing eye and tooshy fat. We don't know yet if I will be able to move the prosthetic eye normally or not, hopefully after my surgery we'll know more.
Oh what fun I'll have scaring the girls when I pop out my eye!

Wednesday, January 9, 2008

My daddy's favorite diaper!

My baptism

I was such a good boy for my baptism! My God parents are AJ & Shawn Martinez and Abel Hernandez and D'Laine DeLaGarza. Pastors Lange and Bauerkemper are the pastors at our church who baptized me.

Relentless Rash!

My mommy has been making lie around naked! Can you believe that? Well I guess it's for the best. I've had this pain in the ... well rear for a week or so. My mommy has tried so many creams! Aveeno, Balmex, Desitin, Dr. Smith's and now she has two prescriptions and nothing seems to shake it. Hopefully this "naked therapy" will work soon!

Tuesday, January 8, 2008

Too cute not to share!

The Seidenschwarzs

We dropped my papaw and pamaw off yesterday at the airport. They are headed to Tanzania, Africa.. for FIVE MONTHS! They're off to do their missionary work once again. They'll be teaching English and doing good stuff.. but I'm sure missing them already. Hopefully they've made it there safe and sound by now. I love you! I'm going to be so big when you get home, but I'll try to keep you updated on my progress.

I told you mom, I'm doing great!

Today was my first session with Cathy from ECI (Early Childhood Intervention). She gave me a workout! She said that I held my little head up so well. I also followed her with my eye wherever she went. I think I really impressed her. She said that we need to continue our tummy time and working with getting my thumbs on the outside instead of tucked inside my fingers. It was really pretty fun, it didn't feel like therapy at all, I can't wait to have her come again!


Yesterday we met with the man who will one day make my prosthetic eye! He was so nice and made us feel so much better about everything. His name is Daniel Wenske and he too only has one eye with vision. He lost his eye when he was four years old and that inspired him to become an ocularist. (An Ocularist is a health professional who specializes in prosthetic devices for the eye. This specialty combines an understanding of color and artistry with expertise in the science of the development and function of the face and eye.) I can't believe that we are finally meeting with someone who understands my condition and has seen many kids with microphthalmia and anophthalmia (the absence of eyes). This is the first time that we haven't felt like we were educating the doctor... we were finally in the right office. Mr. Wenske is eager to get things started on me because I am growing so very fast (I'm up to 10 lbs. already!). The first steps that must be taken include inserting a conformer into my eye. This is basically like an expander for my orbit or socket.

Here is some information from the website I mentioned earlier, it is very informative...

The orbits (eye sockets) are very important for proper growth and development of the face. If an eye is missing or too small, the bones around the eye may not grow properly. A conformer is a plastic shell-like device made by the ocularist that can be placed inside the orbit to help support the growth of the eye socket and the bones in the face. As the child grows, and the orbits and facial bones develop, the ocularist can also make prosthetic (artificial) eyes. Since each child is different, the age when the child is ready for a prosthetic eye varies. The ocularist works closely with the ophthalmologist and oculoplastic surgeon to make conformers and prosthetic eyes that are best for the child. Sometimes surgery may be recommended to implant a prosthetic device deep into the orbit in order to make it easier to fit the prosthetic eye. There are various surgical options available when the conformers are not enough alone.

There is no treatment that can reverse microphthalmia. It should be monitored according to the complexity of the eye involvement. If the eye is small or badly malformed, then an artificial eye or lens (sometimes called a scleral shell or prosthesis) can be fitted for cosmetic reasons and/or for promoting socket growth.

In infants, a prosthesis or conformer generally must be enlarged every few months to expand the socket. This is necessary to stimulate the socket tissues and bony orbit to grow at a normal rate. In the case of a congenitally small orbit, the socket and lid opening is actually smaller than the companion eye. Because of this difference in size, a series of conformers are necessary to stretch the tissues and form a socket into which prosthetic eye can later be fit. The conformer is usually enlarged once a month (weekly according to Mr. Wenske) or as necessary to increase orbital volume as circumstances allow.

As the child grows the prosthesis will need to be checked regularly for size, comfort and fit (usually 2-3 times a year). It also needs to be polished and checked for any damage such as scratches or sharp edges.

When a child’s eyes are fully developed, usually by the preteen years, the prosthesis will generally remain the same shape and size for a longer period of time. However, it is necessary to enlarge the artificial eye periodically or fabricate a new prosthesis from time to time. Depending on he child’s age, this will need to be done every 3-5 years.

If the microphthalmia is unilateral and causing reduced vision in that eye, then the ophthalmologist should prescribe protective glasses with polycarbonate lenses to protect the better eye from injury.

So you can see that this is a long process for us and we'll certainly get to know our ocularist quite well. My mommy took some pictures of our visit. You can see his desk where he'll actually be making my eye one day! Pretty cool huh?

Mr. Wenske decided that it would be best for me to be put to sleep before my exam is done and for the insertion of my first conformer to prevent trauma for me and my parents! It's not painful, but rather just hard for me to relax and remain still for the procedure. This will also allow Mr. Wenske to look inside and get a better feel for what he's working with. We will be meeting with Dr. Fry on Thursday, January 10 - she will be the ophthalmologist who will put me under for the procedure. We aren't sure if the procedure will be done this day or not, we'll keep you posted.

My left eye

The condition of my left eye is called unilateral microphthalmia. Basically that means that I have one eye that is small and underdeveloped. We don't know why I was born this way, but we do know that it makes me super duper special. This condition is so rare that most doctors that we've seen ask my mommy and daddy about it and they know virtually nothing. Sometimes when people have this they can see out of their small eye, but I don't have an optic nerve, so I'll never have vision on this side. The good thing is that since I was born this way, I don't know what I'm missing. Having vision in only one eye is normal to me. If you'd like to learn more about my condition check out this website it has a lot of information on kids just like me, and some that were born with no eyes at all. I'm actually very lucky. I am so thankful that I have vision in my right eye. My mommy, daddy and I count our blessings.

Christmas 2007! (My first!)

Wow! We got to see so many people over two days. We started out by going to church on Christmas Eve and I slept through the whole service and so did my big brother! Next we went to my great-grandparents house. My Leibovitz grandparents were there of course along with my uncle Todd. Then my great uncle Wes and aunt Connie and my two cousins Kristie and Jason were there too. I got lots of nice gifts (I'm so spoiled already!) On Christmas morning we went to my Kneupper grandparents house in New Braunfels. I got to see my aunt Jenny and my cousin Audrey (she is little like me!). We had fun there too. Our last stop on Christmas was at papaw and mamaw's house (Seidenschwarz grandparents). My uncles Bret and Todd where in town too, so they got to see me for the first time. Overall it was fun, but I got really confused because I was going going going. It took me a day or so to get back into my normal routine.

Family photo 2007!

Sidebar - Kayson's birthday!!

My big brother turned 7 on December 12. My papaw and pamaw came over for dinner and cake. It was fun, especially for my brother he got lots of presents. Mommy had his birthday party back in November to make sure it didn't get overlooked. This day was just a small family get together. He wanted a Pokemon cake and mom attempted it, but she's no pro, that's for sure!