FTT Family Journey: Our First Group Therapy

Thank you for following along with our Families Failure to Thrive Journey. If you have read my previous posts you may remember that the Pediatrician gave us a deadline for getting Maddie to gain a few pounds. Madison also had a great milestone with some weight gain! I would like to further update our journey with Madison's first time attending group therapy. Madison sees an Occupational Therapist at Rady Children's Hospital every other week. The therapist decided that Madison would better benefit from having therapy sessions with other children who have the same feeding needs and sensory disorders. We waited for what seems like an eternity (OK I exaggerate- it was only a month) for our insurance to approve these therapy sessions. Once we received the green light we quickly scheduled appointments for every other week.

Photo taken from Internet

Recently we experienced our first group therapy session. The group is made up of four children, two OT's and each child had a parent sitting next to them in a circle. The OT started out the session by introducing everyone in Spanish. Now, mind you, Madison and I are the only two non Spanish speakers there. She quickly introduced Maddie and began the meet. We were completely lost during the whole appointment. Most of our time there was spoken in Spanish with no explanation as to what was happening.  Poor Madison was ignored during most of the talk. She would only take one item (like a good girl) out of each bin offered her without knowing that she could have multiples. She (after finishing said food item) asked for more but didn't receive any (most of the time) because the other parents took more than enough for their children.

Photo taken from Internet

Now, we have nothing wrong with others speaking Spanish or being bilingual. I wish I was bilingual but sadly Spanish is too hard a language for me to learn. Trust me I have tried multiple times. However, I do have an issue with a class being mostly spoken in Spanish when there are others present who don't speak a lick of Spanish. We had no understanding of what was being taught or said which in turn made the session pointless for Madison. It was supposed to be a beneficial therapy appointment by encouraging Maddie to try overcome some timidness towards certain textures. This class (for us at least) was instead a waste of time and money for the day. I will be requesting a new group where English is the primary language so that Madison can get the most out these meetings. I hope I have better news for the next time I update you in regards to our group therapies.

Photo taken from Internet

I do however, have good news in relation to Madison's calorie intake. She has been consuming approximately 1000-1200 calories on some days and is every day surpassing 800 calories without pressure or crying. We are no longer having to fight to get her to reach 800 calories and it has been such a relief. We still have a long ways to go as she is still being extremely picky and selective with what she eats but is greatly showing improvement. Several friends have messaged me proclaiming how wonderful she is looking now. The veins in her forehead aren't as prominent, you can't see her ribs as clearly as you used to be able to and she is eating more compared to drinking than she used to. I pray she starts packing on the pounds quickly so we can altogether avoid hospitalization.  

Reagan Eating Peas and Carrots

Reagan eating pureed foods

I also have great news in regards to my youngest. She has recently started eating peas and carrots whole, loves her rice puffs and yogurt melts and is also eating her purees (about 1 oz each sitting). A month ago she wouldn't touch most things and refused to eat solids. I tell you there is power in prayer! God is good and working wonders in our home and little girls. If you are going through FTT or Sensory Disorder with a child please share your story with us. Whether you are still trekking through or have overcome these issues we want to hear from you and maybe swap ideas with techniques learned to help the kiddos.

A Major Milestone!!

We have some great news!! Although this may not seem like the biggest news to many of you, to us it's a major milestone! February, as you know, started out with horrible news. Our family was threatened with hospitalization for Madison if she didn't start gaining weight soon. Since that day we have been doing our best to achieve a minimum 1000 calories a day. Some days we attain these calories easily and others seem to be an uphill battle. The second week of February was a sick week. Both of the kiddos came down with colds and it took all we had in us to survive the week. Finally the girls seemed better but Madison still had a cough so it was back to the Dr's office for us. Our Dr must be tired of seeing us because we were in the Dr's office once a week for the whole month of February due to sickness. While there though, we learned that Madison had gained a full pound!!!! This is amazing as Maddie hadn't gained any weight for 8 months prior. We were so excited and felt that all of our hard work was paying off. This was short lived though. Madison was put on an antibiotic for her cough that wouldn't go away and that's when things started going south. Somewhat.

The first night we gave Maddie the medicine she had reached her 1000+ calories. Less than a minute after taking her medicine she threw up most of the days food. This happened again the next night. Within 4 days she had lost .6 ounces of the 1lb that she gained. While this was disheartening, it was also not as bad because she had still retained some of the weight she gained. The days that followed her sickness she didn't reach her 1000 calories. While this saddened me (because I stress if we don't reach our goals) I knew she would eventually get back to her normal calorie intake. Her Dr changed the deadline for which she needed to gain weight before hospitalization as well. She was excited that Maddie was showing progress and even stated that Maddie was looking much better in the face.

Now, I know we have a long ways to go and I know that God is working in our little girl to help her overcome her sensory issues and picky eating. I know this because I can already see the changes. Madison recently started mimicking everything we do. She saw daddy eating a bowl of cereal and decided that she wanted some. So, we gave her her own bowl with milk and cereal and to our surprise she ate it all! She even asked for seconds! She has since eaten a slice of pizza at daycare, a slice for us at home and is even eating foods that she wouldn't touch for a while!! She is even requesting her tooth brush during the day so she can brush her teeth while she watches her Mickey Mouse Club House shows. Yay!! I am so excited and I know that this is the start of even more great things to come.

New threats to our FTT Journey

I wanted to update everyone on our Failure to Thrive journey. We have had some very interesting past few months. In my last blog post I reported on our meeting with the Occupational Therapist. Since seeing her we have started Maddie on the new eating rules, chewy tubes, and have begun to really pay attention to her calorie intake. We have had some great days and some pretty stressful days but are still pushing forward. February 1st we had a Dr's appointment for my youngest. The girls' Dr was shocked and scared at how Maddie was looking. Maddie, at the time, had red all around her eyes from not getting a nap all day and the veins in her forehead were more prominent than usual. Maddie looked pretty sick at that moment which freaked out her Dr. She Dr gave us some suggestions and a major warning. She said that if Maddie didn't gain any weight in one month then she was going to hospitalize Maddie. She would settle for even one pound. Her (almost) exact words were "You need to crack the whip and get her to drink 3-4 Pediasures a day. She needs to start gaining weight or I am putting her in a hospital by the first of next month." This is something we did not want to hear.

This mama cried her eyes out all night. I held my little girl close and prayed for her, squeezed her and tried overcoming my personal feelings so we could focus on the task at hand. At that moment I felt like such a failure. I failed my daughter. I failed to get her to eat, gain weight and now we were being threatened with Maddie being forced away from us and hospitalized for 10-14 days. All I could think about was her being alone and scared in that hospital. I pictured the Dr's forcing food and drinks down her throat till they were satisfied. I pictured her crying for her mommy and daddy and so alone and scared wondering what she did to deserve this treatment. My mind probably went a little crazy and over exaggerated the extent of treatment that Maddie would be getting but it did send me into a worry frenzy. I decided to do what I normally do when presented with a problem that I needed answers to; I worry researched.

I was researching ways to increase her calories till 2 am! I reached out to other moms on a  hunch and it paid off! I found this new calorie increasing supplement called Benecalories. It is a 1.5 oz container which is a whopping total of 330 calories and 50% fat. The contents look like coffee creamer and are tasteless. They just change the texture of drinks a little by making them a little thicker. These things are a godsend! Expensive but very much worth it. I can make one of Maddie's Pediasures go from 240 calories to 620 with the help of the Benecalories and some Hershey's syrup for flavoring. This makes reaching our 1000 calorie goal much more attainable and less stressful.  Maddie at first didn't care for the Benecalories but has seemed to have gotten used to it. We have been able to reach 1000 most days with the help of these little things and yes we have been cracking the whip. I hate the pressure and stress this puts on us all but for the moment it is working.