Week 2 as a family of 6!

Hello!

I feel a little out of practice at blogging already, since I am out of the daily habit! We want to try and send out a "weekly update" for everyone so you can see our transition progress! We also will use this venue to talk about some of the upcoming medical procedures we will be going through with Bethany as we address her cleft palate and related issues.

First off, the dog thing has gotten a little better. We still have a long way to go, but Bethany is no longer crying all day. This is not only a good thing for her, but also a good thing for her brothers and her mother, who were getting a little frustrated. Our longtime friend Gene, who speaks fluent Cantonese, came over last Friday night and tried talking to Bethany about Chewie. She was fine to talk to him/listen to him about other things, but she gave a clear indication that the dog was an off-limits topic. However, I think she did listen to him a little bit, and that helped us turn a bit of a corner the following day. It still is a daily struggle that includes tears and frustration, but it is definitely an improvement over last week. We'll take it!

Last week we did get in to see our wonderful pediatrician. We have been going to him since Matthew was born, and we love him!! With him, you can tell that being a pediatrician is not just a job for him, but a calling. Anyway, he is very happy with Bethany's growth and adjustment, and we are getting her caught up on vaccinations as well as treating her ear infection. He also made a call to the surgeon about her cleft palate repair (they are friends) and was able to get our March 16th appointment moved to today!! We are so thankful for his help in expediting this process, as we need to get going on things for Bethany's speech and hearing issues. Did I mention that we love him?? :)

Anyway, today we saw Dr. Sidman, who is a surgeon (I'll spare you the long and difficult title) and also the head of the Minneapolis Children's Hospital Craniofacial Team (hope I spelled that correctly). He was wonderful to talk to and he gave us a lot of information about her condition and the plan for her care. Two interesting points of note: 1)The Asian population has a significantly higher incidence of cleft lip/palate that any other ethnic demographic, and its incidence usually occurs more in the southern part of China than in the northern part. (Bethany is from Wuzhou City, which is in the southern province of Guangxi.) 2) The "pits" in her lower lip are indicative of Van der Woude's syndrome, which is a less common type of cleft palate, particularly in China. This is not of any concern the surgeon has assured us...it will be something she will want to know as she is older as it means her children are 50% likely to be born with cleft lip/palate.

Well, we basically learned that Bethany will have 3 major surgeries in the next 4-5 years. The first one will be in the next 1-2 months, where we will put tubes in her ears, fix the lip pits, and close most of the cleft palate. She will be in the hospital for 1-2 nights and the recovery will be somewhat painful. At age 4-5, there will be some upper lip and nose reconstruction to help with future dental issues and help with nasal tonality. The surgeon mentioned that her lip repair surgery was poorly done, so they will correct some of the work and complete the job. Lastly, at age 6-7, before adult teeth start to come in, there will be a surgery to "build a dental wall" for her teeth to be able to come in. We don't have a lot of specifics at this point, but in this surgery they will take bone from her hip area and graft it into the remaining front part of her cleft palate. I am probably leaving a bunch of stuff out and not being complete in my information, but this is what I can remember and somewhat understand! At any rate, we are glad to have an idea about where we are going from here and that the surgeon is confident is being able to correct things for Bethany.

I mentioned ear tubes...part of our appointment today involved meeting with an audiologist. Bethany is showing moderate hearing loss at this point, which needs to be addressed right away. Hopefully the tubes will help so that she can hopefully regain some if not all of her hearing. At this point she is not hearing well enough to differentiate many consonant sounds, which only creates more issues with her speech. We are going to have to have A LOT of speech therapy once she has recovered from her surgery. Please pray for her in this regard. She is a very bright and eager girl, and we are of course hoping that she will be able to go to kindergarten in 1.5 years - but her speech ability will be critical.

Well, that's the gist of things here for the moment. The boys are doing well. Bethany squeals Matthew's name and throws her arms out for him to give her a hug each day we pick him up from school. Toby and Bethany love to antagonize each other and pick on each other, as well as compete for space on mom's lap. Trent is great at keeping Chewie away from his little sister. They are all being great big brothers and wonderful helpers. We are so blessed.

Have a great week!

Love, Becky for the hayfam6