Thursday, January 31, 2008

My boy and physical therapy

So tired after our early morning. I wish I could have knocked out like this at 10:00 in the morning.

So me and Tegan had a very big day today. First we had to get up very early and those of you who know me know that once I get Rylee ready for school and her and Paul out the door, me and Tegan go back to bed and sleep most of our morning away. I know, I need to get out of doing this but it won't be much longer before he doesn't care to snuggle with me like that anymore so I am just going to enjoy it.
Anyways on to our day, we got up and had to be at Athens Regional Pediatric Rehab at 7:30 this morning. I finally feel like I have met the right person. She is a wonderful experienced physical therapist who sees a lot of potential in Tegan. She knows a lot about his eye condition (Nystagmus) and has actually treated infants and kids with this before. She knows all about the visual problems and the fact that to them their world is constantly moving. She was very impressed with him and not to ring my own bell but she was very impressed with all the research I have done on his condition. For the first time I have hope that just maybe the Nystagmus is the only thing wrong with him. She seems to think that with Physical Therapy and Occupational Therapy he will get caught up pretty quickly and may even be pretty close to target for walking. With Nystagmus walking is one of the hardest things for a child to learn b/c there are balance issues and to them the floor is moving so it is hard to gain his footing. But once they learn they figure out how to adjust. So with physical therapy maybe he won't continue to fall behind. He was very pleasant at the appointment and seemed to really take to a lot of the things that she was doing. The only problem is that she has to get it approved with the insurance and she said that it may be very hard to get approved but she will do everything in her power. So it will take about 2 to 3 weeks to even know if he gets approved. If he does get approved he will go to physical therapy twice a week and occupational therapy once a week. She said he shows signs of being weaker on the right side of his body which could possibly mean that his vision is limited when he looks to the right side. So she will first work on that and also him holding toys.

On a different note we had a representative from the states Early Intervention Program come to evaluate him for possible extended therapy or to do his therapy in our home just in case the insurance doesn't approve the Rehab. But that was the total opposite experience from earlier this morning. This lady knew nothing of his condition and couldn't say who our therapist would be or if any of their therapist know anything at all about Nystagmus. I was not impressed at all. My hope is that we get approved for the other therapy even though it means that I will have drive him to Athens three times a week instead of having the therapy in our home. It will be worth it to me.

Poor fellows day was all screwed up and tonight he was so tired that he could hardly drink his bottle and was screaming (fighting sleep) but now he is knocked out so hopefully me and him can have our peaceful day tomorrow. Note to those who worry about me losing sleep...I will never make another physical therapy appointment that early in the morning, for Tegan's sake and mine.

Tuesday, January 29, 2008

On to baby food...

After several tries and several times of giving up due to more coming out his mouth than what actually even went in (droll included), Tegan is finally eating baby food one time a day. I know he is suppose to be up to twice a day by now but he gets so much cereal in his bottle that it's like he is getting baby food every meal. First I tried squash a few weeks ago...that was no good. Then I tried banana and that didn't work out so I waited about a week before trying again and tried pears, HE LOVES THEM! The whole time he is eating them he is kicking his feet and crying, not a hard cry, b/c apparently I am not quick enough with the spoon. He will cry and then see the spoon coming and stop and open his mouth and then starts crying. It's as if he is afraid that every spoonful is his last.

Random Pictures

Daddy and Rylee loving on each other.

Tegan playing. Don't let the picture fool you. I had to stand to the side and say his name several times and he gently lifted his head for about 5 seconds for me to take a picture of him.

Rylee had her first friend over from preschool on Saturday for about 3 hours of playtime. Probably not the best day to have someone over since I had a sore throat but I stayed away from them both and let them play. They only had one fight the whole time.

The forgotten picture from the birthday party. I had to add this. Mom and Shannon had to have their picture made with Chuck E. Like two little kids aren't they!

Monday, January 28, 2008

Chuck E Cheese

Taylor was amazed!

Breanna and Rylee loved dancing in front of the blue screen!

There is a huge story behind Shannon and myself being on this simulated roller coaster. She basically stood there for 30 minutes and kids kept breaking in front of her until she got mad and blocked it so that no one else could get on it. It was funny!

That's right people....where adults can be kids. Obviously the kids are not the only ones who get to have fun. We had Taylor's birthday party there on Friday night. Although it was hectic it was pretty fun for me and Rylee. She is at that great age now where she can really play with everything. I know what you are being a huge germaphobe actually let Rylee touch and play with the toys, not without a lot of sanitizer. But I still woke up Saturday morning with a horrible sore throat which I am still battling today and trying to keep it away from Rylee and Tegan.
On another note, poor grandma. We left Tegan home with her on Friday night b/c of his screaming problems out in public. Well apparently being at home did go much better. He started crying at 7:00 pm and continued to cry until we got there at almost 8:30 pm. It's like I could feel that he was crying before I even knew it. I was suddenly ready to get out of there with a nervous feeling in my stomach. When we got on the road and called to check on him, sure enough he was screaming. Poor little fellow....I should have just taken him and I could have sat in the car with him if he started crying.

Wednesday, January 23, 2008

Doctors, Doctors, Doctors

So most of you know that Tegan has been having some developmental delays and most recently diagnosed with Nystagmus for his eye problem. It seems like we are constantly thinking about his next Dr.'s visit. Jan. 31st I will be taking him to a pediatric specialist at Athens Regional at 7:30 am....that should be fun since me and Tegan usually sleep until 9:30. He has a test done on his eyes on Feb. 04 at Emory to determine if there is an underlying cause of the Nystagmus. Then we got lucky and don't have to take him all the way back down to Augusta for a 3 month check-up. That certain neurologist comes to St. Mary's once a month and we were lucky enough to get an appointment in April with him for our follow-up....I say follow-up but that appointment will probably tell us more than the last one with him did. In the mean time we will wait patiently on his chromosome testing to get back, which takes forever. Then we don't see the Dr. again about his eyes until July but Dr. Glassman is working to find another Dr. for his eyes...someone who is more up to date on Nystagmus. While waiting for all these appointments we will be seeing his regular Dr. and also starting early intervention with vision therapy and physical therapy. Although I am very happy to report the physical parts of him seem to really be improving. He is getting so much stronger and working harder to do things. He still has a little ways to go but I would say that he is improving daily...even just since his last Dr.'s visit last Friday he seems to have improved greatly. His vision is improving also. He is really following things although he acts like is depth perception is a little off when trying to reach for something. His eye movements sometimes seem to be good and sometimes extremely bad. I plan to keep him away from large crowds another few months b/c his screaming fits are hard to control in a loud area but after that point hopefully we will be able to slowly introduce being at family gatherings.

So that is an update on Tegan and all that we have to look forward to with the Dr.'s. I am hoping since he is showing so much improvement already that maybe a lot of these Dr.'s appointments will be pointless.

Tuesday, January 22, 2008

Where has my sweet boy gone....

oh where, oh where could he be! Somewhere along the way I have spoiled my sweet little boy. So let's take count, that's one really spoiled 5 year old back talking little girl and one really spoiled crying and screaming 5 month old. Tonight while Paul went to play basketball I was left to handle the craziness by myself. Oh, sorry for hanging up the phone so quickly Shannon. Rylee was showing her true colors and then Tegan decided to show his, so for the three hours that Paul was gone I had one kid crying the whole time.
I guess I only have myself to blame....especially for Tegan b/c I am so softhearted when it comes to him, especially with the problems that he has had. Maybe it isn't to late to train my two little ones to be nice and not so dang mean.
Sorry no pictures but I had taken some of Tegan and his flipping puppy but for some reason that aren't showing up on my memory card. I don't think it is full but it could be b/c there are over 140 pictures trapped and waiting to get out.

Monday, January 21, 2008

So the conversation goes like this...

Rylee: Mommy, I need to talk to you and daddy about something.
Mommy: What is it?
Rylee: Well, I really want to have a family like Shannon's. (for those of you who don't know, Shannon has five kids)
Mommy: I'm sorry honey but mommy and daddy aren't having any more babies b/c it is hard on mommy's body.
Rylee: Why?
Mommy: Well remember what happened to Cohen and then when mommy was pregnant with Tegan and had to lay in the bed and couldn't do much for you or with you.
Rylee: Oh mommy, it will go by fast. See you get two babies in your belly at one time and your belly will get big fast....if you tell God, he will hear you.

Oh how quickly kids forget! She hated me being pregnant and now she is saying it is o.k.! Sorry Rylee but we are complete! I just thought that conversation was so cute. The funny thing is that when she was talking to me about Shannon's family, the phone rung...guess who it was, Shannon!

Saturday, January 19, 2008

Creative Motivation

O.k. so I was talking to my sister(Shannon) a few days ago and told her about how I wasn't sure what I had been doing all week b/c I didn't even step out on the porch all last week until Friday when we had to take Tegan. I started noticing that the house was getting more and more messy and that I wasn't getting out of my pj's most days. Ever since we have been alarmed about Tegan, I find myself just sitting in the floor either playing with him or literally just hoovering beside him as he sits in his bouncey seat. So I decided on this snowy (NOT!) day that I would self motivate myself to do a little cleaning around the house. Now don't think that I am horrible for this mess b/c sometimes we all let things go. should be so proud! Also this was my most productive day and yet the first day in a couple of weeks that I haven't gotten a horrible headache. Hmmmm, maybe my problem is that I'm not doing enough, you think?

The Kitchen counter was hit by a tornado (it's not my fault).
The Before picture

The after picture

Rylee's room really isn't my fault. She was home alot this week b/c of having a cold and seem to destroy everything she touched.
The before picture

Here is the after picture

Here is Rylee. She is just give out from all the "cleaning" she helped me do in her room. It had to be done b/c last night I heard Paul threaten to start throwing her stuff away. Notice she is still in her pj's.

Nothing like a little self motivation. In the spirit of taking pictures Rylee wanted to take a picture of me and I wasn't very willing. But once I seen the result of the picture, well let's just say that was motivation.
The before picture literally the shot above was taken at 2:30 pm and the shot below was taken at 2:35 pm. I actually brushed my hair and changed out of my pj's. Nothing like really seeing yourself in a picture.
The after picture

The point of the story is that sometimes I need a little motivation. I am at home all the time now and for some reason I seem to be getting way less done.

Because I'm cute and

so dang fat! This blue and brown outfit is the cutest ever. I haven't let him wear it before now b/c it is a 9 months size and I thought it was to big....well, it barely fits him now. Yesterday was the first time he ever wore it. In Augusta yesterday they weighed him and he was 17 lbs 14oz. That's right, my boy is not even five months old yet and is almost 18 lbs.!

Friday, January 18, 2008


Happy Birthday Taylor man!!!!!

Trip to Augusta

Well we made it through our trip to Augusta to the Medical College of Georgia. It took a little over two hours to get there. The pediatric neurologist didn't have much to say. He did a chromosome test on Tegan....not only b/c of his problem but b/c of our miscarriage before Rylee and our loss of Cohen. He didn't act to alarmed about him but he has to have a starting point so he assessed him today and then will assess him again in 3 months to see if there has been much improvement or a decline. They also referred us to a early intervention program for him with physical therapy, vision therapy and speech(which of course he doesn't need yet). That was basically it!

I called Dr. Glassman's office to see if they could try to get our appointment with the neurologist the next time he comes to Athens. The Neurologist that we saw today travels once a month to St. Mary's to a clinic they offer and I would much rather take him there than drive back to Augusta but we do what we have to do. Anyways while on the phone with Glassman's office she said that there was a note in there about seeing someone else in Athens to start therapy so I don't know what is going on really. I plan to call back on Monday and see if I can just get a consult with Dr. Glassman and figure out what is our best plan of action. Although I feel like we still don't have a plan. Every time we see a Dr. they just say they will see him again in 3 to 6 months. This is getting frustrating and we have no answers.

I became so nervous before the appointment that my stomach didn't feel all that great. Then we really didn't get any answers.

On another note, Rylee is still a little under the weather and she has almost lost her voice. Poor thing....she wants to love on all of us (me, Paul and Tegan) but we don't want to get sick so she is keeping her distance. Luckily she only had a fever that one night.

Thursday, January 17, 2008

Remember us with prayers....

Tomorrow is a big day. We will be leaving home at around 6:00 am and heading to Augusta to the Medical College of Georgia for a 10:30 appointment with the pediatric neurologist. My hopes are that this will be a wasted trip and they will clear him of all other possibilities minus his eyes. So just remember us tomorrow and pray that we get great news and also that we have a safe trip.

Wednesday, January 16, 2008

Bad day

Rylee started with a stuffy nose yesterday and then started running a fever last night. Although her fever was gone this morning we kept her home from preschool today. But then I woke up not feeling well with a bad upset stomach and all I wanted was to sleep it off. Which I somewhat managed to do but not totally. My stomach still isn't well and now I have a bad headache from not eating much today. Tegan has decided that he wants to be held all day. Paul thinks he broke his little finger playing basketball last night. It looks bad and of course it just had to be on his left guessed it, he is left handed.

Now it is snowing and icing over outside. Our porches are already covered and I just pray we keep power. Now Rylee says her throat is starting to hurt.

Monday, January 14, 2008

Making progress

I still continue to work with Tegan daily on his muscles and body tone. He is improving a lot from my point of view. His biggest problem these days is his reaction to things. Being anxious or tired seems to make his nystagmus (eye movement) worse. We have read on the internet that when the eye movement speeds up due to these factors, he may temporary loose some of his vision and well, how do you make a 4 1/2 month old understand that if he would just calm down and go to sleep his vision would come back to him. Just like tonight, I finally had to take him in to a dark room b/c he was fighting sleep and started getting more and more upset and I realized that a dark room helps b/c he doesn't realize that he isn't seeing well. He calmed right down and went off to sleep. He is putting pressure on his legs now, talking, kicking around on the floor, holding his head up better and following toys sometimes...which is a huge improvement from even 3 weeks ago. He still is not always following toys, doesn't really play with them, keeps his hands tightly closed alot, doesn't push up or hold his head well on his belly, not rolling one way and is still a little wobbly about holding his body up when you hold him up right, all of these things should have happened a while ago for him. We see a pediatric neurologist at Medical College of Georgia in Augusta on Friday and maybe he will be cleared from all the muscular disorders that we fear. Our hopes are that his vision is what has delayed him. I would rather it be nothing at all but I will take the eye movement and vision any day over the other options. Double click the video below and listen to him talk. Notice when I scan down with the camera I am showing you that when he started off in the floor his head was where his feet are and he had kicked himself all the way around.

Rylee's 5th Birthday Party and Pictures

We had Rylee a family Birthday party on Saturday. I was worried she would be upset that we didn't invite friends from school but she never even noticed. It's just to much to invite people outside the family b/c I have a lot of people in my family. We had lots of fun: pizza, cookie cake, cookie dough ice cream and a pinata. Tegan had a melt down about half way through but we made it through it and was able to enjoy Rylee's 5th birthday. Thanks to everyone who came and thanks for the gifts. As I take pictures at the party I know that everyone has huge hopes that they will end up on the ever famous family blog. I noticed that Shannon and Melissa managed to dodge the camera b/c I don't have any pictures of them.

Rylee's pizza was as big as her!

Tegan was happy before the party started. The noise upsets him so he didn't look this happy the whole time.

Cally and Leah were born one day apart so we were comparing sizes.

Rylee, trying her arm at the pinata.

Taylor...isn't he cute!

This is Jacob in action. He was the one who finally busted it. But he was so funny when he tried it without being able to see.

Zach seemed a little confused that we were letting him hit at this thing but he did good. I don't know how I missed Breanna hitting it but she did pretty good too.

Princess Amanda is always ready for a picture. Taylor (her son) is on your left and for some strange reason Caden seems to like her (Ha! J/k)

Now it took six pictures to get a picture of mama with her eyes halfway open! She is the world's worst and unfortunately Rylee has that feature also.

Sunday, January 13, 2008


It was a somewhat pretty day one day last week so I put Tegan in his new Georgia stroller that Santa brought him. Doesn't he look like a little man!

Friday, January 11, 2008

Happy Birthday

I can't believe that Rylee is "5" today! Where does the time go!
Happy Birthday Sweet Girl!

Thursday, January 10, 2008

The girl loves to sing...

I taught Rylee this song one night when she was in the bathtub. She catches on quick. She decided to make it her own and add some guitar playing. You have to go check this out.

Wednesday, January 9, 2008


So far that is our diagnosis. I haven't wrote anything about Tegan's issues b/c I was wanting to know more about what is going on. His eyes move from side to side alot, the first three months he wasn't showing signs of seeing, He doesn't have good body tone (which is how he holds himself his head), he is behind in several developmental areas. I started getting a gut feeling at around 2 months that something was wrong but tried to ignore it until I gave in at 3 months and took him to the Dr. They immediately suspected something wrong with him and I was so devastated. Now here we are about six weeks later, an MRI, blood work, urine test, one ophthalmologist in Athens, a pediatric neurological ophthalmologist at Emory, and several visits to his doctor have all occurred over the past few months. I Have really been working with him on his tone and doing lots of strength work outs with him and he is showing great signs of improvement in that you can see from some of the recently posted bumbo pictures. But yesterday we were informed that he still isn't where he needs to be. He has started showing signs of seeing over the past few weeks and he is making great progress with that. He has started following toys and looking at our faces and smiling about two months late but better late than never. Although his eyes still move from side to side, that has improved somewhat also. At Emory the Dr. there said that he had Nystagmus, which is a condition of no eye control. Some people develop o.k. vision with it and some are as bad as to be legally blind. They say that their vision and the eye movement does improve with age but to what point we don't know yet. This could be causing all of his other delays since his vision is slow to develop but just in case we are seeing a neurologist at the Medical College of Georgia in Augusta on Jan. 18th. My hopes are that they rule out any muscular diseases and that Tegan will continue to improve and lead a normal life. All I can do is pray! There, you have what I know so far. There is so much more to the story but I don't want to bore everyone to death!
"I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord- for his whole life he shall be given over to the Lord."
1 Samuel 1:27-28

Check-up time

Yesterday both kids had their check-ups and we seemed like we stayed in the office forever. We literally didn't leave until about 1 1/2 hours after we arrived with one whole hour of that being spent with the Dr. and getting shots.

Rylee's stats: Weight 39 lbs, height 42 3/4 inches. She is on target for everything. She past her hearing and seeing exams with flying colors. Her urine and blood count both were great. Unfortunately she had to get four, yes four, shots and had to have her finger stuck for the blood count. She got two shots in each arm and did great. She started screaming and crying when they gave it to her but she stayed calm before and after getting it done. She is a trooper.

Tegan's stats: Weight 17 lbs and 5.5 oz....yes that's right people, he is approaching his 18 lb mark very quickly! He was 25 inches long. He can start on solids whenever I am ready but I have tried a couple of times this week and he just pushes it all right back out. He did not get his four month shots yesterday due to some developmental problems.

Tuesday, January 8, 2008



Doctor day

Today is the day that I have to take both the children to the Doctor and both of them get shots. I should have a fun afternoon, huh! Rylee gets her five year check-up today and besides a flu shot, she has never gotten shots that she can actually remember. Some little kids at school that are already five have told her all about it and she is so terrified. Hopefully we will get through it without fit pitching. That's what her teacher at school tells them is bad. They can cry but if the pitch a fit then they can't get something out of the prize jar the next day. She said she was going to be strong so let's hope so. Tegan gets his second round of shots, four month check-up. I'm sure we will have lots to discuss with the Dr today since this is the first time we have seen him since our newest info on Tegan. I probably should take a tape recorder. Although I am often complimented on my ability to remember every thing and every big word that the Dr. tells me at each visit the past few months. So I guess I will once again trust my brain.

We went to a birthday party this weekend for Zach, who is five today, and Rylee was so funny. She got mad b/c all the kids were on the back porch listening to Zach's new boom box he just got (which he loved so much he kissed it) and she wanted them to turn it off and listen to her sing and they weren't interested. When Melissa made them do it then they all just got mad at Rylee. She was so upset that they didn't want to listen to her beautiful voice. I was trying not to laugh while trying to make her understand but it was so hard. She is so serious about her singing. I tried to post a video of her singing a song for you guys but I can't figure out how to do it, it keeps telling me I am doing something wrong.

Saturday, January 5, 2008

Sisterly & Brotherly love

It is so sweet to sit back and listen to Rylee talk to Tegan about how they are going to be such great friends. I hope she still feels that way when he is getting into her toys and coming in her bedroom when she doesn't want him there!

Toys, Toys, Toys.....

I love my Birdie! I pull, eat and hug all over it!

My blankie is my favorite!

I have just started playing in my jumparoo yesterday and I really like it. I can hold myself up really good! Mommy is so proud of me.

Thursday, January 3, 2008

Hannah Montana Strikes again...

Paul returned home from a late night of being out doing some insurance business and went in Rylee's room to find her this way. I couldn't resist taking a picture of her. It was the funniest thing ever. She is so in to Hannah Montana and her little wig she got. Me and her went to a party store the other day to pick out what kind of birthday party she wanted and once she saw the Hannah Montana stuff there was no talking her out of it. I tried to get her to do princesses, hello kitty, or ANYTHING else but she wouldn't have it! She's about to be five and she is for sure her unique little self.

On another note my husband didn't turn the water off to the water hose the other night so of course in all this super cold weather it burst and water was just pouring into the backyard right up until we didn't have water. That was when we discovered it. But after a few hours the water came back to us. Thank Goodness.

Wednesday, January 2, 2008


The New Year is off to a good start. It is day two, the dawgs won last night and Paul is up and at work selling insurance. My hope is that life is about to go back to normal. If all goes well I will hopefully be going back to work soon and maybe we can develop a routine and get back some of our lives before everything went a stray!

New Year's Eve

So we had your regular old boring parents Christmas (very relaxing). We didn't go to my grandmother's birthday party b/c Tegan has been a little panicky around lots of noise lately and it makes it very rough on me and Paul. Happy Birthday Granny!

We stayed home and Paul cooked us some chicken fajitas and we were in bed early watching TV. But not asleep early b/c Paul wanted to watch some guy jump a football field on a dirt bike which lasted an hour and a half. We did get us a free Hannah Montana Concert!