But Jesus on hearing this answered him, “Do not fear; only believe, and she will be well.”
Here we are again…
To say things have been CRAZY since my last post would be an understatement. I, especially, feel like we have been knocked down MANY times over the past couple of weeks and every time we manage to get back up we are faced with another obstacle. I can only imagine that if my sweet D could express her feelings she would feel the same way. Here’s a quick catch up then we will put it behind us and talk about the coming week. Therapy has not been going well for Dixie the last couple of weeks. Like I have told you before, we are in therapy 4 days a week. It’s exhausting on me and I am just the taxi driver, so I can only imagine how tired it must make the patient (Dixie). While, I can still say that I feel like we are progressing in each therapy, Dixie just seems to be over it. We have really been pushing her outside of her comfort zone lately. I often drop her off at each therapy because she tends to do better when I am not in the room as her safety blanket. I have been returning to her very sad and sometimes mad and exhausted. I’ve said it before and I’ll say it a million times… our therapists are AMAZING, they love Dixie like she is their own but it is their job to push her. I think as she is getting older, she is becoming more aware which is making her more cautious and fretful. We have just hit a wall and we are waiting for the breakthrough that we know is on the other side. Since my last update, Dixie has been placed in what they call “hip helpers”. Because Dixie has so many varying issues I never really address them all on here. So, to fill you in.. Dixie has a mild form of Hip Dysplasia (the medical term for a hip socket that doesn’t fully cover the ball portion of the upper thighbone.) You may have also heard it called “frog legs”. Here is an example of Dixie’s:
She was just placed in her Hip Helpers last Friday. You can read all the logistic details about them here. Basically, they look like spandex shorts that are sewn all the way down to the knee. Preventing her from having “frog legs” or “W sitting”. They are making her develop the core, quad and hamstring strength that she will need to eventually walk one day. Here is the best picture I could get of her in them on that first day:
Let’s just say.. she isn’t a fan. She has been extra fussy with them on as they are limiting her mobility from moving the way she is used to. We wear them at all times except for sleeping. She hasn’t been sleeping well since she got them because she gets so excited when we take them off that she spends the time when she is usually falling asleep to now playing in her crib with her “frog legs” or feet in her mouth because she hasn’t been able to move like that most of the day. Bless her. I know that she will eventually get used to them and it makes me happy to see her sitting, crawling and standing properly. I think once the new wears off (it hasn’t even been a full week), she will forget they are even there.
On a feeding note since the last time I updated… We repeated and failed another Modified Barium Swallow Study.
Here is the long/short of it– Dixie aspirated thin liquids during the study, She then had deep penetration when she was given the nectar consistency liquids, She had a few slight penetrations when given the honey consistency liquids but not enough to raise a concern that that consistency would be unsafe for her. So, we left there just like we came.. She cannot have anything thinner than the consistency of honey. We will repeat the MBS again in 3 Months. Although, it stinks that she is still aspirating, I was a wee bit relieved that nothing changed. The thought of changing her right now scared me. We have so much uncertainty coming up in our immediate future and with that I really didn’t want to change something that has been working so well for us. Do I want my child to not be aspirating and to be able to eat and drink whatever and whenever she wants? Absolutely. However, right now, it isn’t at the top of mine or anyone else’s “figure this out right now list”.
On a different and probably more personal than anything I’ve shared throughout this process note. On top of the rough therapies, the hip brace and the failed swallow study.. Last week was the first time that someone (on our medical team) referred to Dixie as having “special needs”. It literally hit me like a ton of bricks were dropped on my chest. After we left and I processed it, the rational side of me says Duh, Paige. She has Dysphasia (difficulty swallowing), She is on thickened feeds, she has a Cleft Palate, A Developmental Delay and we are in therapy 4 days a week. Of course she is or requires “special needs”. But for me and for anyone that knows me and Dixie in our personal lives know that she is the happiest baby on the planet and by just looking at her you would NEVER know the battle we are facing. I am constantly telling people that if we HAVE to have a diagnosis that this(everything we are going through) is a diagnosis I will take. While the journey is long and hard and exhausting I still feel incredibly blessed. We have no reason to believe that in the years to come that this whole process will just be a distant memory. When we are in the trenches with all of the doctors and therapists, I most of time go into tunnel vision constantly telling myself “end result, end result, end result”. I guess I just never came up to breathe or think long enough to process that Dixie does have “special needs”. And, I think that is why hearing it knocked me off my feet a little bit. Its okay though, this whole process does not define us and we are so ready to be on the other side of all of this. Though I can’t see the light at the end of the tunnel quite yet, I know it is there and it will be worth it.
Now…where we are now-
Surgery is scheduled ONE WEEK FROM TODAY. Next Thursday, September 11th at LeBonheur Children’s Hospital. Surgery is scheduled for 7:30 am meaning we will arrive at the hospital at 5 am. Dixie will be NPO (nothing to eat or drink) after midnight on Wednesday night, so please pray that we can keep her distracted and happy during those waking hours. We are anticipating surgery to last around the 2 hour mark with about an hour and half in recovery. Dixie will probably be away from us for around 4 hours. In our pre-op conversation yesterday, we were also told to wear shirts that we didn’t mind getting bloody. Just what a mom wants to hear, right? Supposedly the immediate recovery can be and is pretty bloody. After recovery we will be taken to our room where we pray she will rest pain free for the most of that first day. What we thought was going to be a one night hospital stay, we have now been told will probably be a minimum of 4 nights but that it really varies case by case. I have made arrangements for my boys but they are both old enough and fully aware of what is going on and neither are very happy about it. Please pray for them and for all the different people that are so generously watching them and taking them to their various activities and playing “Mommy and Daddy” to them. Please pray for Me and Will as we try to focus our mind on Dixie although our hearts will be wanting our family all under one roof. I must say that more than any other surgery or procedure that Dixie has had, I feel like this one is just hanging over us like a dark cloud. The devil is working overtime on my mind and I am so ready for next Thursday to be here and gone. I am not sleeping well, I have made many late night visits the my friend Mr. Google and Mr. Google Images. <—–number 1 no-no , I know. I am so bad about wanting to know every little detail when really I don't want to know anything at all. I feel like I am living with my stomach in knots as I already hurt for my baby girl and nothing has even happened yet. I will say on a very real note that everything I have read and every doctor or therapist I have spoken with have all said this surgery (Cleft Palate Reconstruction) is not a fun one. The process sucks to put it nicely and the recovery sucks even worse. They all also say that it IS WORTH IT. “end result, end result, end result.” While, I am sure our pray request list will grow as we begin the recovery process my list for you right now and over the coming week is this:
Please pray for the team of nurses and doctors that will be with Dixie on surgery day.
Please pray for Dixie to not be scared and for her mommy and daddy too.
Please pray for Dixie as she will be experiencing a tremendous amount of pain, we pray that she is able to rest.
Please pray for Dixie and all of her caretakers as she will be placed in arm/elbow restraints immediately and for 2 weeks.
Please pray that Dixie responds to the feeding techniques after surgery. We will begin by syringe feeding and because of Dixie’s dysphasia and oral aversion we fear she may refuse food.
I am sure I could go on with many many more bullet points but all in all I just ask that you cover us in prayer as there are a lot of moving parts for us over the next 3 weeks (at least). We have been so amazed by the love and support that has been shown to us and I mean it when I say we feel every prayer. I will update again here after her surgery.