Beau Golden Voss

Ok I am a little behind on posting this (only by 6 weeks) but better late then never.

My younger brother Tj and his wife Shaylee welcomed their first child into their family on Aug 20, 2010.

Beau Golden Voss

6 lbs 10 oz

19 inches long

Congratulations to both of you! You're going to make great parents. I can't wait until November when I finally get to meet him.

7 years

Happy 7th Birthday Areya!!!

Where does the time go? I'm sure it was just a few years ago that I had her, not 7! Wow, it blows my mind to think that she has grown up so fast. Just this week she was telling me about a boy she likes. Hold on, she can't be old enough to start liking boys already, i'm not sure i'm ready for this stage. The boy she likes, that likes her too, is named Joey and it turns out that they have the same birthday. So while making his birthday card she asked me for a pictures of herself. I asked her what she wanted it for and she said it was so Joey could put it on his night stand next to his bed.( Funny right!) I was also informed that I had to leave her hair bows in because he liked them and wanted her to keep her hair like that for his party. (It cracks me up to listen to her) That night at Joey's party his mom told me that Joey has liked Areya since last year and that he told her "Areya makes my heart full of love."

Here is Areya with the help of Aniela opening her presents from mom & dad.

My very talented and amazing friend Tina was sweet enough to make her a Hannah Montana cake. (all while taking care of her 4 little ones) Areya loved it and Tina did a fabulous job, thank you again!!!

This is what she woke to birthday morning.

On Saturday we had a party for her with some friend from church and school. We had cake and ice cream, lots of junk food, a pinta and gifts. The kids had fun running all over the house and of course were way over loaded with sugar but they all had a great time. Thanks everyone for coming and for the gifts. It was fun having you over!

Thursday, which was Areya's birthday, I took the girls in for check ups and flu shots. Due to the high risk for Taevin the immunologist wanted us all to get flu shots and this was the only day I could get both girls in at the same time. What a great way to spend your birthday, right. Well, both girls are healthy and doing great.

Taevin also had a doctor's appointment this week. He saw the cardiologist. They did an EKG and listened to his heart. Every thing checked out great and we don't have to see him again for 3 months. The doctor did suggest that we look into getting Taevin the RSV shot. This shot is very expensive and he would need it every month until the end of RSV season. I hear they are around $1200 per shot. Not all insurance companies will cover it so we are looking into it.

Taevin is still having some issues with reflux but it is so much better then before. We did have to go back to smaller feedings more often (every 2 hours) to help with the reflux so we will have to keep a close eye on his weight. He did finally made it to 11 1/2 pounds (at 4 1/2 months) which is low but not low enough to cause alarm. I was talking to my brother and his baby at 1 month old is 9 lbs 10 oz. If he keeps growing like that he'll pass Taevin up.

A few more hair styles

This one is my favorite so far. It turned out really cute. I was informed that Areya's friend at school (her crush) really likes it too and wants her to keep it like that all the time.

I have been having so much fun doing her hair. I wish I could do some of these on my own hair.

Hair

There are a few ladies at church who do their girls hair so cute. I asked them where they get their ideas from and they told me about some hair blogs. So I have been trying to do some thing fun and different with Areya's hair every day before school. I have come up with a few of my own ideas but have also gotten plenty from the blogs. So far I have only done her hair the same twice. Mornings are so crazy that I only got pictures from 2 styles.

Areya is trying to grow out her bangs and this has been a great way to keep them out of her face. With her short hair I am a bit limited on things I can do but I guess it's good practice for when it grows out.

Here are the links to some of the hair blogs:

www.princesshairstyles.com

www.babesinhairland.com

Adopt A Do

Doctors, Doctors and more Doctors 2

It's been over a month since I posted about how Taevin is doing. We have been to so many appointments that I lose track. Let's see, since my last medical post (the end of July) we have seen:

*Early Intervention

*Speech (5 times)

*Developmental therapy (2 times)

*2 different GI doctors

*the Immunologist

*the Otolaryngologist (Ear, Nose and Throat)

*the Pediatrician

and he is scheduled to see the Endocrinologist next week, the DiGeorge clinic the following week and the Cardiologist at the end of the month. (with a few others in there some where) He has also had Labs drawn twice. I have been one busy mommy. Lucky for me only a few of these appointments are in Chicago.

So after all these appointments I bet you're wondering how he's doing. Taevin is doing great, better then we could have ever hoped for.

Early Intervention came and did an evaluation to see what extra help he might need. We decided on Speech therapy to help with feedings, help vocalize more and help increase sound volume. He also has a Developmental therapist who comes and works on meeting mile stones. They each will come to my home twice a month to work with him.

As of right now we also see the speech therapist from Children's every 2 weeks until the EI one is up to speed. We found out that Taevin was aspirating on the thicken milk as well so we had to increase the amount of thickener. We are still working on tongue control, keeping a good seal and pacing during feedings. He is now up to 4 oz every 3 to 4 hours.

We had a follow up with the GI doctor and they said since he was gaining weight that they did not feel it necessary to put him back on the feeding tube. Thank goodness!!!!!! He has been doing better since being put and the Zantac but still has awful episodes. I'm not loving this GI doctor so I got the name of one from a friend and decided to try her out. She took him off the Reglan (which can causes Parkinson's like behavior) and put him back on the Prevacid. We'll see how he does on these. We're scheduled to see her again in a month.

Our visit to the Immunologist was very positive. Even though Taevin is missing his Thymus gland he seems to have a full T Count. They want to see him back in 6 months to recheck his levels and in the mean time he has to stay away from live virus immunizations and everyone has to get a flu shot. The girls are going to love that.

I don't know if you remember me talking about Taevin's weak cry and loud breathing but we went back to the ENT to see if there was any new information. They put a scope down his nose to get a look at his throat. They said it was very red and swollen most likely due to the acid reflux. They were not able to get a look at this vocal cords due to the swelling and extra skin that is growing around them. They are still not concerned with the loud breathing and they feel is cry has improved. We are scheduled to go back in 3 to 4 months for them to try again.

At the Pediatrician we finally had his 3 month check. He looks good and is growing. He now weighs 11 lbs 2 oz and is 23 1/2 inches long. This puts him in the 10th percentile for both his height and weight. He also got 4 immunizations. We go back in 2 months.

The labs he got drawn were for his appointment next week with the endocrinologist. She has been keeping an eye on his calcium levels. As of right now he is still taking a supplement 3 times a day and we are hoping to ween it back some more at this visit.

I think that's all........

It amazes me that I can keep all this straight. So many doctors and so much information, but with such great feed back I couldn't be happier.

First day of 1st grade and picture day

Areya started first grade on the 18th. It's crazy to think that I have a child old enough for first grade, well I guess she is old enough for second grade or would be if her birthday was just a few weeks earlier. Anyway, she is very excited for a full day of school, as am I, so she can eat lunch with all her friends.

Areya's school pictures were in the second week of school. Crazy right! Anyway, I took a few pictures before she left just in case they don't turn out. She looks so grown up, tear.

At home photo shoot

Aniela wanted her picture taken with Taevin so I got the camera out and started shooting. Here are a few of my favorites.

Next time I will have to get Areya to join in the fun.

What do you get when.......

What do you get when you leave your 6 and 3 year old alone together? Art work all over the 3 year old's body, well at least that's what I got.

I guess I got lucky because it was not all over the floor, walls, and their clothes but most of all because it was a washable marker. Thank you Crayola you made me one happy mama.

Family reunion 2010

Here are a few pictures from our family reunion. To bad not every one was able to make it. Oh well, I guess there's always next year.

My dad holding Taevin

Some of us bowling

My brother Matt with the girls

The reason we all came together. To celebrate my aunt Kimmy's 50th birthday

Caterpillar races

My mom and Grandma talking on Skype with my brother and his wife who were not able to come. We missed you Tj & Shaylee

We split up in to teams and has some relay races. It was so much fun. We had sack race, 3 legged race, get the frisbee in the hoop, crab walk race, fill the bucket, pop the balloon, water balloon toss and a few others.

Bubblegum blowing contest and whip cream fight

Crab walk

This is how Grandma and Taevin spent most of their time.

And this is how every one else spent most of their time.

We also blessed Taevin while every one was here. It was such a nice blessing with a strong spirit. Thank you dad for being willing to bless my sweet babies. With all the craziness I forgot to take pictures of his special day, what a terrible mommy I am.

What was the point?

Have you ever left the doctors office and think "Why do I even bother?' That's how I felt after leaving the GI doctor's office yesterday. I have been waiting for almost a month for this appointment thinking I would finally get some answers to Taevin's reflux problems, but instead I leave extremely disappointed. Here's the story..........

I get there 30 minutes late due to road work and the fact it is impossible to find the place. After waiting 15 minutes to be registered we are finally called back. Get in the room sit down then strip Taevin down and they weigh him 9 lbs 4 oz. What? Only 9 lbs 4 oz? He was 9 lbs 15 oz on Friday. Next the student doctor comes in for a medical history. Asks about his heart defect, his stay in the hospital, about my pregnancy, the reflux and his BM's (they always got to know about the poo). She does a quick exam and listens to is tummy. In comes the doctor asks what my concerns are. (extremely bad and painful reflux) Then we talk about feedings and current medications. I am then informed that Prevacid (which Taevin has been on from the beginning) does not work for babies his age. The doctor says to stop the Prevacid and start Reglan along with the Zantac. Next he starts talking about the lack of weight gain and Taevin only being in the 10% for his age. I think, ok he's a bit small but considering his first month of life it's not to bad right? I guess not because he starts talking about putting back in the feeding tube, which is the last thing I want to do. The reason why he is considering this is because babies burn most of their calories by eating and since Taevin is eating so often (every 1 1/2 to 2 hours) he burns more calories then he takes in. The doctor sends us home with a RX, a lab order (to check his levels) and a follow up appointment in 4 weeks.

Helpful? Not really. Happy about the way things went? Not really. Got the answers I was looking for? Not really.

So on our way home I stop to get his labs drawn. The poor little guy was poked 4 times. They just couldn't find a vain and once they found one it clotted before they got enough blood. They finally ended up sticking the bottom of his foot and squeezing it out. After that we went home and laid down for a much needed nap only to be woke a little later by a phone call from the doctors office saying that his labs came back showing *elevated potassium. They wanted us to go back and get them rechecked to make sure it was not a *mistake. So after a quick Google check on *Potassium and me having a small 'freak out' we headed back to Lake Forest to try again. They poked him again getting nothing so they opted for the foot poke. The doctor's office never called back so I am guessing the levels were normal the second time.

Taevin's 2 month check up is tomorrow, I guess we see what the Pediatrician says.

* Potassium - Potassium is a substance essential to your body. A mineral in nature, potassium is considered an electrolyte. Electrolytes are charged particles, containing ions, whose tiny electrical charge helps to send messages through your nerves. Therefore, either elevated or lowered levels of potassium will affect your nervous system by sending innacurate signals, sometimes resulting in paralysis.

* Elevated Potassium - When potassium stays in your blood because your kidneys aren't filtering it out, you may experience weakness accompanied by an irregular heartbeat.

*Mistake - it is easy to obtain inaccurate measurements of your blood potassium levels. It's very likely that your blood sample has been "hemolyzed," where the pressure of drawing blood into a vial or syringe breaks open the delicate walls of red blood cells. These cells leak their concentrated amounts of potassium into the plasma and other parts of blood, so hemolyzation will give false high potassium readings. For this reason, elevated potassium levels may be difficult to determine without further medical attention.

Happy Independence Day

Happy 4th of July! This year it was on a Sunday so we got up and went to church. After church we spent the day just hanging out at home waiting for Damian to get home from work. I picked up some fireworks at the store a few days before and the girls couldn't wait to lit them with daddy. Little did we know that the only things in the packages were snaps, smoke bombs and a sparkler tree. Can we say LAME!!!!! We were all pretty disappointed. I guess next year we will have to make a trip to WI and get some cool ones.

My disappointed family.

Damian holding the sparkler tree.

The girls throwing the snaps.

Baby shower and doctor's appointments

On Thursday the ladies from church had a little party to celebrate Taevin entrance into the world. They had some games, yummy refreshments and cute gifts. Thank you to all of you for your loving support, your prayers, the gifts and all that you have done for us! We truly are blessed to have such great friends.

That night after I got home we had some major drama with Damian's mother (see me for details) which resulted in me having to take the girls to Chicago with me for Taevins doctor's appointments. So bright and early ( 5:30 ) Friday morning we were off to Chicago. Traffic wasn't to bad and we got there a little early.

First was Taevin's cardiac follow up. They did an EKG, ECHO, chest x-ray, checked his O2 and listened to his heart. The only concern was the left vessel leading to the lung has a sharp turn which lets the blood flow a little less freely to that side. At this point it is nothing serious and they will be keeping an eye on it.

Next was the swallow study. Since he has so many issues with feeding they were concerned that he was breathing in the milk instead of swallowing it. What they do is give the baby breast milk or formula mixed with liquid barium. The baby is placed in a feeding seat and the fluoroscope table is tilted so that the response of the pharyngeal area during feeding can be captured as a permanent video image. ( I Googled it, just in case you were wondering ) we did this twice, first time the milk was thickened and the second time it wasn't. The test showed that he is refluxing ( you can aspirate the refluxed milk also) and having a hard time swallowing it all down (It takes him a few extra swallows then normal) and with the non thickened milk he was aspirating. So we need to continue thickening his milk and give him plenty of breaks so he can get it all down. We are scheduled to see the GI doctor on Monday and hopefully he will be able to give us some solutions to the acid reflux problems.

What a long day, we finally made it home around 2pm to an extremely hot house. The A/C broke and is going to cost either $1000 to fix or we will have to get a new one. "Come what may and love it"

2 months old

On the 13th Taevin turned 2 months old. It's crazy how fast the past month has gone. He is doing pretty good. He is still having problems with acid reflux and has started having a few problems breathing. He has times where he struggles to breath and the breaths are really hard and loud. It has started to worry me but we have not taken him to the doctor yet because on Tuesday he was suppose to get his swallow study which would tell us if he is aspirating, but we never made it to Chicago. Instead we sat in traffic for a hour and a half only to make it to the about 30 minutes away. There was a 4 car pile up and we sat on the freeway forever! I had to reschedule but since we were in Lake Forest I decided to get his blood lab done. (To check his calcium levels)

He has started to smile at us and loves to be held by anyone who is willing. I will be getting him in for his 2 month check after my family leaves, so I wont know his stats until then.

Areya has become such the little mommy. She is so good with him and loves to hold him. She is always willing to help out. Both the girls love their brother so much! I am glad that they are both old enough to enjoy this time with him.

I looked out the window and what did I see........

It seems we have a new friend. This deer has made our yard it's new home. She has been hanging out for the past week or so eating my flowers. Damian tried chasing her off but she keeps coming back. If she ends up sticking around we might even name her.

It's fun to live in an area where we get so much wildlife in our yard. We have seen a fox, skunk, deer, rabbits, possum, squirrels, birds, fireflies, and even a coyote.

Doctors, Doctors and more Doctors

Taevin had a total of 4 doctors visits this week. The first one was in Chicago at Children's. We had to be there by 9 am which means we sat in traffic with all the other people who had to be there by 9. This appointment was to check his incision, it is healing well. All the stitches are internal and should dissolve on their own but for some reason it is irritating the skin and had caused some blisters. One of the stitches was sticking out so they removed it and said to watch for any more.

The next appointment was on the same day at Lake Forest with the Endocrinologist. She is going to be watching his growth and calcium levels. He has been on a calcium supplement since surgery and the plan is to start weening him off of it. The trick is to find a good balance because if you have to much calcium it can cause kidney stones and if you don't have enough it can cause seizures. His level was a bit high so she lowered his dose. While we were in the office they asked if they could record us for a commercial they are doing for Children's Memorial. It will be on You Tube in the next few months.

On Thursday after a very long sleep less night and most of the day crying (Taevin, not me but I wanted to) I set up an appointment with the pediatrician to talk about his extremely bad acid reflux. It is so bad that he cries for up to a hour after each meal, spits up with milk coming out his mouth and nose, and has a hard time sleeping. I have tried every thing and nothing has helped, even the medicine for reflux isn't helping. Any way the doctor feels that the problem could be that his opening is to large and does not keep it in his stomach. He is sending us to a Gastroenterologist and I'm praying they will be able to help. The earliest appointment they had was not until the end of July so my poor little man has to suffer through it a while longer.

The last appointment was Friday in Chicago. This appointment was with the speech therapist. They are working with me on getting Taevin eating properly. DiGeorge kids tend to have problems while eating such as breathing the milk into the lungs, not getting a good seal, not being able to control the flow and choking. Taevin is having several of these problems and so we have to thicken his milk, use special nipples and next week he will be getting a swallow study to make sure it is not going into his lungs. (this can cause pneumonia) I never knew feeding a baby could be so complicated!

What a crazy week! He only has 1 appointment scheduled for next week so I will get a little break from all the running around. We are having family come to visit for 2 weeks. It will be so nice to see them and take my mind off all the medical stuff. I think we are going to have my dad bless Taevin while he is here. I am planning for July 18th @ 9 am and would love to have you there.