Tuesday, June 30, 2009

NICU follow up Appt

Today Kyleigh had a 6 month check up/follow up appointment with the NICU clinic of Women's Hospital. It was an interesting visit. According to the CDSA she should have had the follow up at 3 months but somehow her chart was ear marked for every 6 months for 2 years. As it turns out we will not be going for any more follow ups to their clinic because Kyleigh is already connected with so many doctors and specialists at Duke Hospital and therapists through the CDSA. However, today she saw the nurse, Dr. Wimmer (neonatologist), Becky the PT (physical therapist) and a nutritionist. She weighed in at 10 lbs 8 oz and a length of ---oh I forgot but she is long. :) Her length is on the mark with the growth chart and so is her head circumference. But her body weight continues to be below the growth chart record and less than 10%. She will remain on the high caloric diet for now. I also found out that it is safe for her to take the Vanilla flavored EleCare formula that we ordered even though the can says for 1 year old or older children. That is good news as we will no longer have to add vanilla flavoring once we finish out the unflavored cans we ordered.

Dr. Wimmer listened to her heart and said he couldn't hear the murmur but that sometimes ASD (atrial septum defects) are hard to hear because the flap closes and doesn't allow for sound of blood flow to be heard. On the other hand, it could mean that her heart murmur has resolved itself and that is great news. He said the place on her back was a hemagioma (forgive the spelling as I have no earthly idea how to really spell this medical term). Regardless, it is a harmless spot of tissue and blood vessels that usually gets bigger before eventually disappearing. He looked at her eyes and told me that the puffiness of the right eye seemed to be from her lymphatic system overproducing fluid and it also was completely harmless unless it affects her vision. He noticed the bad spots on the back of her head and suggested we contact Dr. Whelan for a stronger prescription medication ointment to clear it up. He also suggested we speak with Dr. Ulshen about her acid reflux and address her medications. There are many new drugs available that we could consider if Dr. Ulshen feels that they will work after reviewing her records.

The physical therapist worked with her some on rolling over. She did a great job again today. She will roll from tummy to back with assistance and much grunting. It is so cute. She also will sit propped on one hand with support from an adult but not without complaining :) That's my girl! She showed us some positions to work on and ones to avoid that will help strengthen her trunk area. The PT and doctor both seem to feel that Kyleigh is not as "high" muscle tone as the other therapist have reported but that she responds to pain and reacts with constriction when moved suddenly. We go to see the neurologists at Duke tomorrow to confirm and rule out the possibility of CP (cerebral palsy) as well as address some of her medications. The PT and Dr. Wimmer felt that Kyleigh nervous system was still immature and that would explain her still having the startle reflex and response.

They also addressed her car seat. They were concerned that it had been altered with noodles by the therapist to adjust her position. Although they agree her position in the car seat is incorrect and causing problems for her, the alteration of the seat could be damaging in the event of an accident. They suggested we "test" drive many car seats and find one that she "fits" into without modifications for the most safety. If they had tested her in the car seat today she would not have passed the safety test. So it looks like Babies' R Us here we come to give you more money -- again!

They also addressed the concern about training her to use a cup starting at 8 months. Currently, she will not spoon feed without complete and utter tears. I have no idea why she suddenly is refusing to spoon feed but it is very dramatic for child and parent. The occupational therapist suggested we take a break from the spoon for a day and dip her food with the pacifier and offer it that way but not to use the bottle feeder. At her surgery for the cleft palate she will not be allowed to use any suction or place fingers or objects in her mouth as it will interfere with healing. So using the pacifier for feeding is no different than using the bottle feeder because it isn't teaching her to eat but allowing her to use her sucking skills more. They noticed that she calms easily with her pacifier but suggested that a few months prior to surgery we wean her from the pacifier as she will be unable to have that after surgery as well. Can you imagine? The one thing that soothes her and she can't have it! I want them to come to my house and soothe her then after her reflux episodes that make her body completely shake while she cries and tell me not to give her a pacifier. Honestly, I thought this wouldn't be a big deal because Kaitlyn gave up her paci before age 2 but 8 months!!!?? Really?? To some parents this is trivial and their child "never took a paci"---well congratulations but my child doesn't suck her thumb and this soothes her. I am so frustrated by this news just as much as I am frustrated with the fact she is refusing food right now. She is even decreased her formula intake with the exception of her first morning bottle. I hope she gets through this soon.

On a positive note her double ear infections looked clear today and they should after 15 days of an antibiotic!

Well, tomorrow brings a host of another day with doctors. She will see Dr. Freedman at the eye clinic in the morning to check her pressure. It was extremely high last week and we need to see that the drops have made a difference or they will be scheduling another procedure/surgery to reduce the pressure. Then she will see the neurologists at the Lenox Clinic. Pray for us. Pray for Kyleigh. God Bless.

Sunday, June 28, 2009

Kristy Titcomb is now Kristy Miller!

Kristy and Josuha Miller - June 27, 2009 at 11am The Grain House in NJRehearsal Dinner- June 26, 2009 Kristy's mom, dad and sister Kim

Mom, Kim, and Kristy at the pedicure salon in Metuchen
The Gazebo - beautiful
Kristy and Josh the night before the wedding- happy couple
The 3 bridesmaids- pretty flowers (Myself, Michelle -cousin, Kim)
Nephew Corey (CJ) and teddy (ringbearer) escorted by brother-in-law Tim
The Sand Ceremony - Kristy had orange and Josh had blue

This weekend I had the great pleasure of attending and participating in the wedding ceremony and events for my friend Kristy that lives in NJ. We became friends my sophomore year of college, which was her freshman year and have remained friends ever since. She was in my wedding 8 years ago (we celebrated 8 years this past Tuesday) and I was lucky enough to be in her wedding just yesterday-June 27, 2009. The events leading up to the wedding and the trip leading up to the wedding weren't as spectacular. Both of our girls had been sick, I was sick on Father's Day, and on the day of our anniversary (Tuesday, June 23rd) I was sick again. I had the horrible stomach flu/virus. So needless to say we weren't celebrating, rather I was home in bed praying I would make the flight in the morning to NJ. We had planned to arrive in NJ on Wed morning and go sight seeing in NJ and then on Thursday make a day trip to NYC. Well, I managed to stay sick through Wed and then made Dennis sick. Luckily, I made it on and off the plane without embarrassment to myself or Dennis. But we spent Wed and Thursday at the Olde Mill Inn (hotel) in the bed praying we would feel better in time for the wedding. Thankfully, by Friday morning we were both feeling much better. This began our vacation and celebration of the upcoming wedding. (Unfortunately, back home in NC Kyleigh was still very sick and my dad and grandparents were sick. So Kyleigh ended up at the doctor and Kaitlyn ended up at my friend Angela Osborne's house with her best buddy Hadley -- Thank you Angela!)

Friday morning the girls were set for pedicures and manicures to prepare for the big day on Saturday. Then we went out for a celebratory lunch that was supposed to be with the gentleman as well. However, her brother-in-law and nephew were sick so the men (except for my husband) stayed at the house while we visited the Edison Family Restaurant. Dennis and I headed back to the hotel for the afternoon and the rehearsal dinner was that evening at a very nice restaurant. We enjoyed the company of Josh and Kristy's family and most of the bridal party. During the drama of illnesses lurking about there were also two car accidents that occurred with two members of the bridal party at separate occasions. Both were fine but it did hinder their attendance to the evening meal.

Saturday began very early with a wake-up call at 5am for shower and make-up so I could be at Kristy's parents home by 7am. We finished getting dressed with Kristy and took some photos at her parents' home. The wedding was to begin at 11am at the Grain House (outside under the gazebo) at the Olde Mill Inn. It was beautiful. Kristy was an elegant and calm bride as she waiting anxiously for them to escort us to the cobblestone walkway and begin the ceremony. What a blessing to watch her grandfather rise from his wheelchair and walk down the aisle with her grandmother as tears of joy streamed down her family's cheeks. Then back to all smiles as we walked down the aisle for her to become wed. They had a very unique "sand" ceremony instead of the traditional unity candle. It was cool! The ceremony was quick and we were off for pictures and then cocktails and party time! It was over by 5 pm but it was a great time for all!

Above are some pictures of the events including pedicure time. Enjoy!

Wednesday, June 17, 2009

Kyleigh and Kaitlyn update

Yesterday we met with Guilford County Schools and signed paperwork for Kaitlyn to begin receiving vision services. She is officially considered visually impaired on paperwork and this will allow her to receive modifications in her learning environment such as large print material, screen covers to reduce glare on computers, as well as working on helping her track properly with her eyes.

Kyleigh continues to struggle with her reflux and we are awaiting an appointment with the GI doctor to re-evaluate her needs and best way to address the reflux. Due to the combination of her reflux and her cleft palate she is experiencing ear infections regularly. She went to the doctor today and found out she has a double ear infection again. So frustrating to watch her in pain. Hopefully she will recover quickly from the ear infections and we will be going to the neurologists on July 1st and GI on July 10th to get some help.

Monday, June 8, 2009

Physical Therapy

Kyleigh had her evaluation today by the PT (physical therapists). She described Kyleigh as extremely "stiff", high stressed, and poor muscle tone (almost too strong). She highly suggested a referral to a neurologists for an MRI scan to check her muscles and spine. She also qualifies for PT services weekly. So for now she has OT and PT weekly for 60 minutes and VI biweekly for 60 minutes. I am so grateful for all of the advice, help, and services that she is receiving through early intervention. 

Sunday, June 7, 2009

Early Birthday Present for Kaitlyn and Prayer Request for Kyleigh

Recently, friends of ours (Kristy, Nick and Kinley) stumbled across a steal of a deal at Home Depot on a swing set. They had 3 on clearance and we were lucky to get one. Dennis has worked long and hard and it is almost finished with just a few more minor additions - teeter/totter swing and a swing for Kyleigh. However, it hasn't stopped Kaitlyn from enjoying the fun already. Below are a few pictures. 

PS. Saturday morning while Dennis was working Kyleigh had a "blue" episode where she refluxed and stopped breathing. I was extremely upset by this and called Duke Hospital to speak to their GI doctor immediately. They have increased her dosage of Prevacid and we haven't had another bad reflux episode since Saturday morning but I am still a little beyond paranoid about her right now. Please pray that God heals her from this reflux as it is not only causing damage to her esophagus each time but now it is impacting her ability to breathe freely. 

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