Tuesday, June 29, 2010

Big Red Cast

There are 2 color options for a cast Cohen's size at our orthopedic office. Blue and red. The first cast he had was blue, so I thought the logical (and cute) thing to do is have a red cast this time.

We might as well be carrying Clifford the big red dog around with us----he would draw less attention.

As you know, Cohen doesn't get out much. The last 2 places we have been (both doctors offices) 5 or 6 people at each place have stopped us and asked: "What happened to the baby?" When Justin is with us, he tells people he has " an old football injury." I attempt to tell them "he is not injured, he was born with a crooked foot that needs help to straighten."  I have also noticed other people staring and giving him sad looks. I guess they think we dropped him or something!

I think I find this so funny since the blue cast did not attract near (if any) of the attention as the red. You wouldn't think the color would make that big of a difference.

Needless to say, on our "changing of the cast" visit next week, we will be back to Ole Blue.


Monday, June 28, 2010

CARS

I just had to post this.

For those of you that have seen or heard Ames in the last 3 months, you know he is completely infatuated with the movie CARS. Cars, Cars, I want CARS! (he says this all day long!)

Needless to say, he was more than thrilled with the new pajamas TuTu (Deb) and Calee bought him last week.


Lebanon Visit

Last Sunday, my mom hitched a ride with a friend who was headed to Nashville to see her grandbabies, (thanks Mary!) so we met them in Lebanon to pick her up.

We had a little extra time so I made Justin drive by my old Lebanon house. It looked better than the last time we went by there a few years ago. I would love to go in and see if they have changed all our quirky paint and blue retro kitchen that I loved!

 After we got mom and found a place for her in the car...(Mom and Calee have to climb in through the back because of the boys carseats in the middle, its really something to see=) We met TuTu (Debbie Woodroof) for lunch at Gondola, our favorite Lebanon restaurant we used to eat at all the time.

We also got to see Young, our friend that owns the place and her precious grandaughter. We ended up staying there for hours, laughing and catching up. It was great to see all of them.

Calee ended up staying with Deb the rest of the day, and meeting us in the Boro later that night. Here is a group pic I took at Gondola. TuTu and LuLu protested this picture....but I had to capture the moment!


Sunday, June 27, 2010

6 months old

It is hard to imagine that 6 months have come and gone since baby Cohen arrived over 12 weeks early! It will be his first birthday before we know it!

 
Cohen had his 6 month checkup today, along with several other specialist appointments this week. It has been busy, to say the least!

Here are some "highlights" and stats of what is going on in the precious life of Cohen.

  • Cohen weights 12 lbs 3 ounces and is 24 inches long (we think the cast weighs 3 or 4 ounces)
  • Cohen has a bright red cast on his left leg to help straighten his foot/leg and loosen his heel cord
  • He will have a series of 2 more casts, then begin to wear a brace on his leg, we are not sure how long he will wear this, it just depends on progress-if this does not work, he will have a small operation to "clip" his heel cord.
  • All feedings are still given through his "G" tube, he takes 135ml(s) of a 24 calorie formula every 4 hours
  • He will have a repeat swallow study on August 2nd to see if we can safely start bottles or possibly rice cereal and/or baby food
  • Cohen's NICU follow clinic visit was great-he is still at risk for developmental delays but we are hopeful they will be minor (we go back in December for the next appt)
  • TEIS (Tennessee Early Intervention Service) is coming 1 to 2 times per week for physical and developmental therapy for Cohen
  • Nurses for Newborns continues to come 1 time a week for weight and overall health checks
  • Had 6 months vaccinations at the pediatrician last Thursday-we were nervous about his reaction since all the others were given when he was still hospitalized, but he did great and had no reaction
  • Cohen is an extremely happy and animated baby, he laughs, smiles and LOVES to be tickled
  • He loves his baby swing and bouncer seat (as long as someone is nearby)
  • He sits up with support--i.e. bumbo seat, boppy pillow
  • We are still keeping him in and away from crowds as much as possible
  • I trained my Mom to tube feed him last week, so Justin and I have a back-up in case we need it (she did great!)
  • Cohen still loves his pacifier and has several favorite toys he plays with
All in all, things could not be better with baby Cohen! He is an absolute joy and we are so thankful for every moment over the last 6 months.

We are also thankful for all of the family, friends, and complete strangers that have prayed for and supported us during this time. We will never be able to repay you, and we are grateful beyond words.

I am sure I will think of many things I have left out----I may have to do a 6 month old part 2! Thanks for caring about our family. Love to you all.

6 month old slideshow

Sunday, June 20, 2010

Happy Father's Day!

I just wanted to take a minute and say Happy Father's Day to the amazing Justin. I cannot imagine anyone being a better husband and father than he is to Calee, Ames, and Cohen. Our strength has been tested like never before, and Justin never fails to rise to the top. He is a wonderful and loving man and I am thankful to God for placing us together.

Here is one of my favorite pictures, one of the first times Justin held Cohen.


Thursday, June 17, 2010

Big Boy in the Bumbo!

Some mornings when I get Cohen out of his crib I am certain he has grown from the night before! He is really coming into his personality. Instead of getting an occasional laugh from him, now we get them all day. He smiles constantly and just LOVES anyone to talk to him. He especially loves watching Ames play...he will follow him with his eyes all over the living room. He has also become a great audience for Calee, when she is singing, dancing or putting on a play. (which is basically 24/7 =)

My friend Julie brought us a bumbo seat at church last night. I couldn't wait to get home and try Cohen out in it----I was shocked that he immediately loved it and sat right up like a big boy!

As soon as we took him out, Ames plopped down in it. He did not want to get out! I guess we will have to get him one too-


Granny Holder

Justin's great grandmother, Granny Holder, passed away this week. She was 92, and she was an unbelievably charismatic lady that never met a stranger, even in her late years. She accepted Calee and I as her family immediately the first time Justin took us to meet her 7 years ago.

She also became fast friends with my grandparents when they moved here and loved visiting with them in the time they lived with us. I have thought all week about them greeting her in heaven and her telling them all about Ames and Cohen. =)

She will be greatly missed by many.

Irene Holder, 92, of Murfreesboro, passed away Tuesday, June 15, 2010 at her residence. Mrs. Holder was lifelong resident of Rutherford County. She was a homemaker and was a member of Westview and Bellwood Baptist Church.

Mrs. Holder was preceded in death by her parents, Charlie and Ida Bell Compton; husband, James Marvin Holder; sister, Lucy Mae Spradley; brothers, Grady Compton; and Howard Compton. She is survived by her children, Betty Daniels of Kansas, James O. (Dot) Holder of California, Chester (Mary) Holder of Florida, Peggy (Ed) Barrett of Christiana; nine grandchildren; 15 great-grandchildren; four great-great-grandchildren; sisters, Charlene Manus of Murfreesboro and Nannie Sue Parker of Murfreesboro.
Visitation with the family will be Friday, June 18, 2010 from 11 a.m. to 1 p.m. at Murfreesboro Funeral.
Graveside services will be Friday, June 18, 2010 at 2 p.m. at Roselawn Memorial Gardens with Chaplain Bob Bush and James O. Holder officiating.
Those wishing may send condolences online at www.murfreesborofuneralhome.com.

Saturday, June 12, 2010

Cohen's first date!

We took the plunge last night and took Cohen to dinner. We met his "girlfriend", Emma Claire for their first date outside the NICU! It was so much fun. We have gotten together with EC's mom and dad, Matt and Emily, several times, but this is the first outing with both babies out of the hospital.

Of course, Emily and I documented the event in detail so we can embarrass them later.

We started out from afar and then put them together. They weren't so sure at first. EC even brought Cohen a piggy bank! By the end they loved playing and trying to hold hands and coo at each other. Seeing these 2 little miracles is amazing. On the way home, (we met halfway) I thought about how people come into each others lives at just the right time. Without Cohen and Emma Claire being born premature and spending extended time in the NICU, we would likely have never met the Warren family. I have no doubt that this was all part of God's plans for us. We feel very blessed to have them to share this experience with. I can't wait to see what the future holds for these babies!

Wednesday, June 9, 2010

Cohen's new cast

Like I mentioned in my last post, Cohen got another cast today. The last time he had cast on his legs, back in February, we kept meaning to take Calee's American girl doll crutches to the hospital to make some pictures, and just never did.

So, as soon as we got home, we pulled out the crutches. I hope you all can appreciate the humor in this. First we got Cohen all positioned and took his pictures, then......well, I'll let you see what happened next! I hope that old wives tale about playing with crutches is not for real!!!!


A better day...

Today was a much better day. Thanks to all of you that have checked on me today, I guess I sounded really over the edge by the number of phone calls and texts I got!

We had a great day at Vanderbilt today. Cohen ended up having 3 appointments. First we went to the BPD (Pulmonary/lung) clinic. They basically just went through Cohen's medical history and then evaluated his lung functions today. They thought he looked and sounded great. We did discuss his risk factors as far as asthma and RSV, flu, etc. The doctor said he has a 50% chance of having asthma. She also said he would be at a 50-75% increase of being hospitalized if he catches a cold, RSV or flu in the next year or so. They recommended us still avoiding him in crowds for the time being. I asked her specifically about church and she said she would give him a little longer. =( I was really hoping to take him soon! I guess we will give him a few more weeks and decide then.

Our next appointment was the NICU follow-up clinic. This is the clinic that follows NICU babies progress at 6, 12, 24 and 36 months. We were supposed to have this appt. on July 1st, but they called yesterday and asked if we could do it today. I have been eagerly anticipating this appointment, since I knew they would give us the developmental information I have been concerned about. SO-they asked us about 300 questions, observed him for about 10 minutes, read him a book, and scored him on 3 standardized tests. Now, I am usually not a huge supporter of this type of testing, but in this situation, the results simply give me more information, which is what I want. I want to learn everything I possibly can in this situation.

The scored him 2 ways. His actual age and his corrected age. So, 6 months and 3 months. He was above average for a 3 month old in every category. He was a little below average for a 6 month old in the physical categories, but in the cognitive areas he scored above a 6 month old! We thought this was great news! The follow-up coordinator was really encouraged and thought he was doing great. She gave us some things we can work on, and we are already getting started tonight! I can't wait until the 12 month appointment to see more progress...this is right up my alley!

The last appointment was the dreaded orthopaedic appointment. We got there 10 minutes early and the nurse called us back immediately. Then we waited 2 hours in the room to see the doctor. They put a cast on his left leg. It took 5 minutes. We will go back in 2 weeks to have it removed. The doc thinks 3 or 4 cast will be enough to fix it. The other option is a minor surgery where they clip his heel cord. Hopefully the series of cast will correct it and surgery won't be necessary.

While we were at Vandy, we stopped by the NICU and were able to see a few of Cohen's nurses, Susan and Heather, and our favorite social worker Lauren. It was so fun to see them, and they could not believe how much Cohen has grown. Cohen smiled and was a big ham for them!

It was a great day of positive news, and we are grateful. No matter how rocky things have been, I look at Cohen and thank god for his life and the progress he has made.

Tuesday, June 8, 2010

Perspective

It's funny how sometimes when you really need a little perspective, it comes to you in an unexpected place. I got an email today from a friend . Here is the quote she sent me-


Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. 1 Peter 5:6-7
 
The funny part is this friend had no idea what has been going on the last couple of days, so it must have been divine intervention.
 
I have to admit, for the first time in many months, I was having a little pity party this morning. Let me explain.....
 
Yesterday, Calee had that follow-up eye appointment I had mentioned in my last post. She and I both went to our regular eye doctor last week, to get a check and some new glasses. The doctor said he saw something in Calee's eye, and that he wanted us to have it looked at by a retinal specialist. He called it "micro aneurysms", he said he just wasn't 100% sure what it was, and would feel better giving us the referral.
 
To make a long story short, we went to the retinal specialist yesterday and he was very concerned. Calee has some blood filled pockets on the back of her left eye. He called them cysts, sacs and blisters....he simply wasn't sure what to call them They kept asking us if she has had an eye injury, which she has not. The doctor said he was baffled and needed to consult his partners and some colleagues. This doctor was extremely thorough, and he kept us there about 3 hours doing tests. We gave him our entire family medical history, and he was particularly interested in a blood disorder I carry.
 
We go back in 2 weeks to regroup and see what he finds out. 
 
Here is the good news-----its not affecting her vision at all. It could be something she was just born with that no doctor has picked up on before. It also could have been from some strange infection she had that had no symptoms. It is scary---and nerve racking. The hard part about the whole thing was how upset Calee was. She is old enough to understand when things are serious, and the doctor was very honest in front of her. It was a lot for a 10 year old to take in....it was a lot for me, a 32 year old to take in too! After Calee calmed down last night she looked at me and said, "Mama, sometimes I guess life is just full of bumps in the road and we have to drive through them" I thought that was pretty insightful.
 
On top of this my mom had another surgery this morning. It was minor, and she is doing fine, but I wasn't able to be there and it bothers me not to be there for her. She is always there for us.
 
My only other complaint is dealing with Cohen's SSI. Cohen has SSI Disability as a secondary insurance (after our primary) due to his birth weight, the G tube, and just all his little issues. I can honestly say I have NEVER, ever been more frustrated with an agency in my life. The policy has been screwed up from the beginning and I can't ever seem to get it fixed. I literally spent 4 hours last week on the phone trying to get them to change our address and Cohen's address to the same one. They apparently think he lives somewhere else? I called today to make sure the "glitch" had been corrected. After spending 37 minutes waiting on hold, I got a rude, not helpful woman on the phone. Ovcourse the address was not fixed, and the woman was no help at all. I hung up feeling helpless-----and I hate that. I am truly at a loss with this and I guess I will just have to go there in person.
 
So, all in all, I have been a little stressed the last few days.
 
I know that life isn't always sunshine and rainbows. I know that things will work out, one way or another. I know that my expectations aren't always the reality. I know I can't be in control all the time. All of this I know. It's what I don't know that scares me-
 
It took me until about 2:30 p.m., but I finally put on my big girl panties and dried it up. No use worrying about everything that is going wrong. I am vowing to focus on all that is right....before I go nuts!
 
Thank you for reading this rant of a blog, and I am thankful for each of you and the friendship and love you give to my family. We are headed to Vandy with Cohen for a full day of appointments in the morning. I will let you know what we find out.
 
Good Night.

Sunday, June 6, 2010

June 6th

Wow----June already! Where does the time go? I LOVE summer! I love the slower paced, less urgent schedule we keep. I love the increased cook-outs and get togethers with friends and family. We have already had homemade ice cream twice! If that doesn't just scream summer, I don't know what else does.

Actually, I  don't know what I am talking about with a slower schedule. The next 2 weeks are packed full of camps, appointments, VBS, parties and all sorts of other activities. Calee is doing a musical theatre camp this week, they will be performing "Grease", my all time favorite. She is so excited about it. Calee also has an eye doctor follow up and orthodontist appointment this week.

Cohen has a day full of Vanderbilt appointments this Wednesday. He will get his dreaded cast put on! I am excited about his appointment with the BPD (pulmonary) clinic. I really think his lungs are improving, so I am anxious to see what they say. Our plan has been, if we get a good BPD report, we will take him to church for the first time, finally! I am just dying for our church family to get a glimpse at him.

I am also taking Cohen to a consultation with TEIS (Tennessee Early Intervention Services) in the morning. I am hoping they will get started with everything they do---I feel like we have been waiting on them forever!

Ames is going to spend tomorrow at his "Mur-Murs", (Justin's grandmother Ms. Thelma), he loves going over there and spending time outside and seeing all the dogs. He is becoming such a ham----we are always laughing at him and he loves it!

My Mom and Ed came in Friday night and stayed until Saturday afternoon with us, then they headed to Memphis for auction business. Mom knew I needed to get out a bit, (I've been a little stir crazy this week) so as soon as she got here Friday Justin and I went out to run errands and have dinner. She also watched them Saturday morning while we went to Lowe's. It was a treat, and I am thankful she is willing to do it, (along w all the laundry she did in those 24 hours she was here) I know, I know, we are totally spoiled!

I will update everyone Wednesday when we get home from Vandy. Please pray for positive results and improvement for Cohen. We really feel like he has made progress, and we hope the doctors agree! Hope everyone has a great week!