Last one of the Year!

In my last post I had mentioned Molly needed to go back to the eye doctor because we had noticed that she was tilting her head again to compensate for her vision. We went back last Monday. They are kind of stumped and I'm confused as to why because to me it makes perfect sense. They don't understand why she is tilting her head so much. They are trying to prove that her head tilting has nothing to do with her vision but it has everything to do with it. While we were there they put a patch on her eye and they were hoping we could just patch it and that would be the answer but she still tilted her head. They put her in a mild prescription and she never tilted her head. They looked back through their notes and the last time we saw any head tilting was a year ago September when she wasn't wearing glasses so we are going back to glasses. The doctor said that she will probably need surgery in the future because her eyes are misaligned but for now we are going to stick with glasses until it's absolutely necessary. Her glasses should be in this week.

I had an appointment with a child psychologist today regarding Molly's anxiety issues. She didn't tell me anything I didn't already know but it was nice to have confirmation that we are doing all of the right things. I went through her medical history and developmental history (she will meet Molly on her next visit). I told her that I think the majority of the problem is that she can't tell me what is wrong and she said that is 100% correct. I also told her that I try to explain to her in great detail what we are going to do, who is going to be there, etc and she said that is exactly what I should be doing and I'm doing everything right. She seems to do better when it's the two of us and we can take our time and just focus on each other and not what is going on around us. She said that if we (Jay and I) start to get anxious she will feed off of that so we need to stay calm. She said that if she starts getting fussy, whining or crying we need to just ignore her. Don't talk about it or draw attention to it which is what I try to do anyway. As her speech improves, her anxiety level will go down and I hope that is the case. This doctor used to work in a hospital and she said that the way Molly behaves in new surroundings is so common among kids that have spent as much time in the hospital as she did/does. I said that it makes me so sad that she can't have fun at the places she should have fun at and she loves going to the doctors and therapy. She said that when she was developing and growing that she was always in the hospital, at the doctors or therapy so it's all she knows and it's completely "normal" that she reacts this way but as she gets older it should get better. She doesn't really understand why this happened all of a sudden and she can't make the connection to her anxiety because she isn't just anxious around big crowds or at loud places and it has nothing to do with people...it's on places. So she too is stumped. So Molly will meet her at the beginning of January. She doesn't think there is a whole lot she can do because they don't typically treat kids this young for this reason but she can give me some tools to use and hopefully teach Molly some things through play. Fingers crossed!

We were so focused on saving her life for so long that I never would have imagined all of these issues this far out. She has had to overcome so much more than open heart surgery and it just doesn't seem fair. She has had to overcome narcotics withdrawals, developmental delays, nightmares, fear of not knowing what was next, pain and now anxiety issues. We have got through it all and we will get through this too! But through it all she has remained the happiest little girl and I'm grateful for her today and every day. I hope everyone has a great holiday season and a Happy New Year!

Update

When will I ever learn? Anytime I go into one of Molly's doctors appointments with the "eh, this is an easy one attitude" it comes back to slap me in the face. I'm going to back track a few weeks.

I had asked for an OT evaluation at the rehab facility that she goes to for PT & Speech. She was evaluated and started services the following week. My reason for her getting OT services is because she has trouble with feeding herself. She eats fine...not gagging, swallowing, puking, choking. She has silent reflux and is on medication for that but to watch her you would never know. The only reason why we know she has silent reflux is because when her gtube was removed her GI took a look while he was in there and saw some redness. I just wanted some pointers on how I can get her to feed herself...if they had any tips or tricks. Of course the week before she started therapy she started feeding herself better than ever. I know it's just going to be time but I want to help her move along. She had her 2nd appointment on Friday and I left there wanted to cry because I was so mad. Molly's baseline is congested. She always has some kind of cough. Sometimes it sounds worse with the change in weather. If she goes from a hot climate to a cold climate she sounds more "junky". Well, her OT can not get past her junkiness. She is trying to figure out why she is congested. I have told her several times that it is all upper airway and that everyone (all of her doctors) are aware of it. She was asking me if she sees Pulmonology and I told her repeatedly no and that there isn't a need. She asked me if she ever had a chest X-ray and I refrained from the answer I really wanted to give and told her, "yes. She was in the Cardiac ICU for 8 months and received them daily". She was asking because she wanted to make sure that her lungs were fine and I said yes. Then she told me that she wanted her to have a swallow study because it's been a few years. There is no need for a swallow study. A swallow study would tell us why she wasn't eating and she is. I just want to know what to do to help her feed herself. My problem is often times when we meet a new doctor or at times a therapist they all want to be the one that "fixes" a problem and I hate that.

So Molly had a wellness visit with her pediatrician today. She is seen every 6 months instead of once a year. The first thing her pediatrician said to me was that she received a letter from the rehab facility requesting a swallow study. It took everything I had not to lose it. I explained the whole situation and her pediatrician agreed with me that her congestion is not related to her feeding but her congestion is concerning and we need to look into it. So we are going to make an appointment with ORL (a.k.a. Ears, Nose & Throat). Since her congestion seems to be coming from her nose or throat we don't know if she has some granulation tissue causing it or there is something going on in her nose since she had an ET tube down her nose for 5 months or something else.  Either way she is going to be seen and try to figure out the cause. I guess when we are discharged from a specialist we are never truly discharged.

She also asked me about her eyes because she noticed that she was tilting her head when she was looking. I told her that we had noticed her eyes getting worse over the past month. She has been tilting her head back more to compensate. I had just looked today to see when her next eye appointment was and it's not until March so I have to get her in sooner and most likely into a pair of glasses again.

My other concern is Molly's anxiety when she goes some place that she has never been. When we go to the doctors, Target, school or a place that she goes to often she is happy as can be. But if we go some place new her anxiety level is so high. She cries and whines the entire time we are there and we usually have to carry her. We have showed her pictures before we go, tell her where we are going and talk about it, tell her what it's going to be like and no luck. It doesn't matter if there is 1000 people there or 2 people. She does not handle it well and I think it's getting worse. She was never like this before and I don't know when it changed but it's been going on for a few years now. So I mentioned it to the pediatrician again and she agrees that something needs to happen. She suggested that we see a psychiatrist. I have an appointment in two weeks to meet with her while Molly's in school then she will meet with the both of us. It just makes me so sad that she should be able to go to these places and have fun like every other kid and she can't so hopefully the therapist can help us out. It may be a huge waste of time but it's worth a try.

Aside from these issues Molly is doing great. We have a parent teacher conference on Wednesday but I talk to her teacher just about every day. She is so happy with all of her progress. She said when she asks a question in class she usually asks Molly last if no one else gets it because she knows that Molly always knows the answer. I wish I could make the rest of her body function just as perfectly as that little brain of hers. We continue on with all of her therapy and are enjoying this holiday season. Molly HATES Santa with all she has but likes everything else that comes along with Christmas. She is totally content with not believing in Santa. I guess I won't be writing "To Molly From Santa" on presents this year...especially because she can read now. Ha ha!

Thank you for reading my winded update. I hope you all have a happy & healthy holiday season!

Kerry

                                           (From Thanksgiving day)