Summer Fun

HI there, I feel somehow that I need to update this blog and start blogging about our family and the fun and challenges that we experience. Of course, I first off would like to update about Brianna. She is doing great. She is now almost 2 and 1/2 years old, walking independently with and without her braces. Her speech is coming along well after her cleft palate repairs. She is very social and loves hanging out with her friends, going to parties, and most of all, playing in her kitchen. Attached are some photos to see her progress.

Brianna Cleft palate Repair update

Hi there, Brianna had her surgery - there have been some bumps in the road with her airway. Surgery itself went well. It is her airway and secretion management that has resulted in ventilation for 2 nights.

Last night was overall good - she continues to be on the venilator. She continues to be sedated. As the sedation wares off, she moves her arms and legs and wants to pull at all her tubes, leads, etc.... so then they have to sedate her some more. This is a nice thing for us as it is great to see that she is still "in there". She also responds with an elevated heart rate to our voices and calms when we rub her hair - the exciting things that a parent can grip onto when your child is in this situation.

As for her medical status - we need your prayers. Tomorrow will be a big day for us. Mid-morning (time unknown exactly) she is scheduled to go back to the OR to be extubated. We have to pray that her airway is able to be maintained on her own and that she will not need to be re-intubated or be trach'd. We are waiting to see Brianna's primary ENT Dr., and see what he feels is going to be necessary. Right now he wants her to remain sedated and let the secretions from the procedure and the lungs decrease. On a second note, we have to pray for no pneumonia. Due to the fact that there were so many secretions and she had to be placed back on the ventilator - she may have aspirated some of the fluid and thus have aspiration pneumonia. They started her on some antibiotics to stay ahead of this but also have taken a culture to see if she is growing any bugs. As for today, the plan is to keep her sedated and wait for tomorrow. That means Ryan and I will get one more night of rest before the "big day". We hope the "big day" will not be a repeat of Tuesday night!

Please continue to pray for:
1. Brianna's medical team to have knowledge and the needed skill.
2. A successful extubation with Brianna's ability to maintain her own airway with no Trach needed.
3. Peace and patience for mom and dad.

What we are thankful for:
1. Brianna and her fighting spirit
2. A dedicated Medical staff focused on Brianna
3. Each other and all the support from family - friends - and the good lord


That is all for now - light your candles, say your prayers - keep your fingers and toes crossed - whatever you do tomorrow for Brianna's success!!!! Big hugs to all from the Barle's.

Love
Ryan, Bridget, and Brianna Barle

Brianna Cleft Repair

Hi there, how are you all doing? We are doing good. We have had a lot going on lately. We sold our house at Christmas and are getting settled at our new place. It does need some updating as the décor is not our style, but that will come with time.

The other thing I would like to update you on is Brianna’s surgery. She will undergo her cleft palate repair on Tuesday February 10^th. This will be a 3-5 hour procedure and then she will be hospitalized for 1-2 days following if all goes well. Of course, we are worried about anesthesia however we have the same anesthesiologist that we have had the other 4 times she has been under. We do feel very confident in that. The real kicker of this procedure is the recovery process. Brianna will have to eat soft pureed foods for 6 weeks and can only use a traditional cup. Nothing can go past the teeth. The first 3 weeks, she will also have to wear “No-No’s” on her arms. These keep her arms straight so she does not put anything into her mouth. Please pray that we make it. She has always been a trooper and she is resilient, but we are nervous. The Dr’s. tell us to prepare for weight loss. Ryan, and I are getting ready for a smoothie diet as well. Being that Brianna is almost 2, she wants to try and eat everything we do. We are right in it with her. Bring on the yogurt, protein, frozen fruit and blender. If any of you have any good pureed food recipes, we could use them.

So please pray for the following –

1. No sickness prior to surgery (so she can have it).
2. Successful anesthesia and surgical procedure
3. Smooth recovery with good adjustment to new diet
4. Patience

Unfortunately, we also will have to endure another hip surgery in the future. We found out 2 weeks ago that when Brianna is sitting in a “frog” position, her hips are in, but when she stands or straightens her legs out, the hips pop out. One good thing is the sockets are forming nicely. It is just the ball of the hip that does not want to stay in. This means, they will cut the bone, realign the hips, and place her in the lovely spica cast for a minimum of 6 weeks. We find out in May when this procedure will take place. On a positive note, the Dr. was very pleased with how well Brianna is standing, walking, and getting around. Our visit was spent walking up and down the hallway because Brianna would not stay in the room. Brianna let her Dr. assess her and then she took her for a walk while we discussed her hips. It is great having such a flexible physician accommodate your child.

I will be sure and send an e-mail out as soon as I can following her procedure. Please keep the “Barle’s” in your thoughts and prayers. We appreciate it!! ANy advice from people that have experience is greatly appreciated!!

Brianna Barle Birth 3/26/07

March 26, 2007 was a special day. We gave birth to our daughter Brianna Barle. After a long labor and poor progress, a C-section was performed. Brianna was born around 4:28 pm weighing in at 7 # 14 ounces, and 18 inches long. It was a very scary time for us. She had some difficulty breathing and had some anomolies. She was born with dislocated hips, knees, and a cleft palate. We were held for 48 hours at our local hospital and then transfered to the University of Michigan NICU. There every test was run on baby Brianna. She was later diagnosed with Larsens Syndrome.



This is an embryonic connective tissue disorder that occurs during gestation. Larsen Syndrome can be inherited as an autosomal dominant or recessive trait. It is characterized by multiple dislocations of the major joints, deformities of the feet and hands, abnormal segmentation of the spine, and by an unusual facial appearance which include a flat nasal bridge, wide-spaced eyes, and a prominent forehead.