January 17, 2012

Life with Jenna the past 6 months.....

Christmas morning!
At her school Christmas party
Floating in the water
Making a sand castle!
Riding on the boat-wind blowing in her hair!
Family pic in the pool!
On the plane for the first time!
Lovin birthday cake at cousin Sophie's birthday party!
Halloween-I'm a witch!
First day of school!
Hi everyone-
Sorry I have not updated the blog for some time....life with Jenna has been busy! She is growing and changing so much, right before our eyes-it is A-M-A-Z-I-N-G!!! We are so proud of her in so many ways. I cannot believe that in just a few short months, she will be 5!! So, let me catch you up on everything she has been up to the past six months.....
The last I wrote, we were in the hospital and Jenna had just had her trach removed, permanently. Well, we came home and she continued to do well. She started letting lose and really enjoying things. In July, we returned to see Dr. Arjmand, for a follow up scope of her trach site. The area looked great on the inside, but he was concerned because the site was not starting to heal. He stated he wanted to wait a few more weeks and if the area was not starting to close and heal then we would have to possibly do surgery to stitch the area close. It was a little disappointing, but we were hopeful. He stated that this only happens to 5% of cases, and I thought-of course! Jenna likes to do things her way and she is making a statement now. Haha At the end of the month we celebrated a wedding reception here in WV for Justin's brother CJ and new wife Molly. It was stressful to plan, but Justin and I managed. And we are so happy for the new couple-welcome to the family Molly!!
In August we were able to enjoy our very FIRST FAMILY VACATION!! Justin was able to take off from work for 10 whole days and it was wonderful! We hopped on a plane-what an experience with babygirl! She loved it!! We went to the beach in Florida and stayed with Justin's aunt Laura and cousin Aimee. We had a blast, taking a boat ride, went shopping, went to the Auquarium, swam in the pool and Lil' Miss saw the beach for the very first time!! So much fun-we can't wait to go again! We even got to see puppies be born while we were there(his aunt's dog was pregnant)-Jenna was instantly in love!
In September we were back in the hospital. Her trach site did not heal and close on its own, so we went back to the OR. Her ENT surgeon who placed the trach in, was attempting to stitch the area closed, in hopes that with making a site, that her skin would grow together once stitched. The surgery went very well, Jenna was a rockstar once again! Almost two years to the day of placement, her site was closed. We were so thrilled. Once we returned home, we began services again for home school based preparation for kindergarten. She was excelling well in speech therapy and in her development. It was awesome to watch her talk more each day. Later that month we went back to Cincy for another clinic visit with her ENT surgeon. He looked at her site and determined that it had not closed completely, but it had only been a couple of weeks. He was hopeful that in a couple of months, her skin would grow together. We will see. So yet again, we would be making another road trip.
In October was another exciting month. Justin's aunt made a trip all the way from Florida to bring one of the puppies to us for Jenna. We were so excited to see her and the puppies again-we just to decide which one we wanted, what a decision! We finally decided on one, and we named her Bella. :) She is so cute and excited-now the process of having another "baby" begins. What a challenge!! Later in the month Jenna was able to go trick-or-treating for the very first time. She has dressed up and visited family before, but she had never gone from house to house. It was great-just watching her face light up was priceless!
In November, we made a huge step in Jenna's life. She began Pre-K at Conner Street Elementary, which was so exciting! She was thrilled to meet other children and play. It was a great moment. Of course, the first day Justin and I went together and dropped her off. We let her go sit down with the rest of her class and said goodbye. We knew she would be safe(we had already pre-met with the staff and explained her situation), but it was just hard because she was growing up. I as mommy of course cried, but I am so proud of her, as is Justin. When she first started school, she became sick with a respiratory infection, but she managed to fight it off herself. Later in the month we returned to see Dr. Arjmand again in Cincy for an ENT clinic visit. He looked at her neck, and noticed that there was a very tiny whole still remaining. He noticed the area was red, and I had also informed him that she had been sick recently. He was to cauterize the area with nitric at the site to help make the skin fresh and allow it to re-grow. However, since she had been sick, he was not comfortable going through with the plan. So we made arrangements to come back in January. He said that if this procedure did not close the area, we would have to return back to the OR to re-stitch the area. He said it was "highly unlikely" this would happen, but in the same sentence he said-but she likes to push the threshold doesn't she?? I said yes, her heart team had let her go for a while, so she just wanted to play with the ENT department in the mean time. HAHA
In December, we went to Cincy-but this time for a trip to the Neurodevelopment Clinic. We wanted to discuss with her heart team about making sure that she was on track with everything. We met a behavioral pediatrician to discuss her development, a neurologist, genetics counselor, social worker and occupational therapist. The visit was vevry informative. She also continued at school, doing well, meeting new friends. She talks about class at home-she paints, sings songs and has craft time. We had her school Christmas party, they made crafts, and sang holiday songs. Jenna was supposed to have a "special part" in the song. However, she became very tired and over stimulated during the party and she "checked out". She cried and sat over on the chair during the songs. We were hoping she would sing, cause she did all the time at home, but she was tired. We also celebrated Christmas with family and had a wonderful time. Jenna of course got waaaaaaaayyyyy too many presents-but that is ok, she is spoiled.
So right after Christmas, Jenna became sick. She turned very quickly on Justin and I-very tired, coughing, sneezing-her usual upper respiratory infection symptoms. We went to the doc, were given meds and sent on our way. At first I thought she was improving, but it was a no go. By Friday, I did not have a good feeling. So I called the pediatrician again and went to see her. Well, I guess my gut was right because we were sent on our way to the hospital to have a chest xray done and some bloodwork. Within 20 minutes of leaving the hospital to come home, I was called and told that it seemed that she was developing pneumonia based on her results. So it was determined that she needed to be in the hospital for more higher dosed antibiotics. So-another trip to Cincy!! We arrived late Friday night, ran some tests and she began her medications to help make her better. By Saturday evening, she was another child-she had improved so much! By Monday she had made such a dramatic change they felt she was well enough to go home and switched to a home medication and we were on our way! We just figured that Jenna wanted to ring in the new year a special way!
We have continued to improve since her illness, she is on the mend now. We received bloodwork results back from genetics, and it was determined that she did not have any chromosome abnormalities, which was great. We are returning to Cincy next week to meet with a Speech therapist to determine her level at this point of development, and see if she will be able to start school in the fall. We were to return to see the ENT doc again at that time, but we have postponed it to late Feb since she has been sick. We are also going to be seeing a physical therapist in February since she has not started running yet, she actually just shuffles. Hopefully we will have good results from the appointments. Also, since school she has begun talking so much more-she asks questions now(i.e. what's that, what happened) and is able to identify the difference between boy and girl and she is making more 3 and 4 word sentences than before. We are so proud of her and cannot wait to see what she will do next!! I will continue to update you as much as I can!! Thanks so much for keeping up with her life and praying for her! We appreciate it so much!


  1. Jenna, Justin, Jenny, I am sooooooooo proud of you and love you so much!!! Jenna's and God's PLAN just goes on and on!!!!! Go Jenna Go Girl!!! You have come so far and have so much further to go!!!

  2. Hi Smiley Princess Jenna

    My name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are princess hero, beautiful trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. http://www.caringbridge.org/visit/champ291 I love it when people sign my guestbook.I was born with a rare life threatening disease, and 12 other diagnosis.

  3. Hi Jenna Girl..Iam glad to hear you like school so much. You will make a great Cal Poly student. Iam always think of you and praying to God for your well being. He always answers prays and we know he has surely answed yours. God Bless you darling girl and happy birthday this week...