Felipe saw his pediatrician on Tuesday. Overall he is doing great and she was delighted to see that the new therapy technique has yielded such great and speedy results. He is at 50% weight and 60% hieght for a child his age. During the physical, the doctor checked to see how his hips were doing. Prior to Janurary, she had not felt any difference in his hips. The Ortho at Mt Sinani came for a consult during his week long stay there and she was the one who noted that he had a very slight (and couldn't be seen by regular physical) hip displacement. Reviewing the X ray she determined both hips were displaced by 30%. The new ortho, at Hospital for Special Surgery seemed to agree that the displacement is very minor and might even be considered normal for his age. So basically, we were to monitor the hips with X rays in September.
This physical exam, the doctor said she could feel the hip, the left one, coming in and out of the socket. Not a good sign. Felipe was not in any discomfort or any pain. She was concerned that it was something she began to feel, whereas a few months ago, it was barely noticeable that she couldn't identify it. She asked if I could call the Ortho and schedule an earlier appointment. The PT at home had also made a comment about his hips, his concerns that Felipe hasn't kept weight on his left leg for long. Thinking that September wasn't too far away, he thought it would be ok to wait till then.
Spoke with Ortho's secretary and nurse, they recommend him to come into the office immediately. Felipe has an appointment with Ortho on Monday at 9am. He will most likely get a physical and an Xray to see whether the hips have gotten worse. Again, this all is a domino effect from not being able to bare weight on his legs bc of his feet. If there is no weight baring on his legs, his hip sockets do not form deep groves. If there are no deep groves, the hips remain with a very little arch and can cause hips to get frequently dislocated. Surgery would be required to make the grooves deeper.
Praying that we have a solution and a plan for Felipe's overall physical therapy and rehabilitation by Monday. Since we have to go see Ortho we will have to cancel the Monday appointment at the gym, and depending when we get out of the appointment, possibly the speech and special instructor appointment.
Its a bit disheartening to hear that hip surgery is a possibility. So far he has been making such great progress and I don't want that to end or be derailed due to recovering from another surgery. And I was getting used to not being in a hospital environment for long period of time. Being away from home and by Felipe's bedside was very exhausting and not the greatest for my health. I ate whatever was available and usually ordered comfort food. I'm also making strides in being healthier and don't want to be derailed by more stress. However, stress is inevitable and so I'll have to take it as a challenge to be better even under the stressful circumstances.
In December, while I was in a particular funk with all the stress of trying to settle back from the rehab center, coordinating the services to come into the home, and trying to find an answer to his drop foot, I spent a lot of my time watching TV. They say its like "chewing gum for the eyes" but really for me it was my escape. And what better way to escape the stress of life by binge watching episodes of CHUCK on Netflix. CHUCK is this comedy/action series about a dorky, college drop out who unwillingly becomes the holder of information for the CIA and he has to become a semi-spy while the try to get the info back from him. Its a comedy bc he is so dorky, untrained spy and all the messes he gets into. But I mention CHUCK bc in the series he has a brother in law who he lives with, Captain Awesome. He has a real name but everyone calls him Captain Awesome. He got that name bc he does everything well. He is friendly, he is an outdoor adventurer, he is an avid biker, traveler, etc, and during the day he is a doctor. He is the boyfriend of chuck's sister who he lives with and the comedy surrounds it all bc they don't know that Chuck is a semi-spy and all the ridiculous things that Chuck has to cover up before he blows his cover.
Anyway, a long detailed explanation of my own moment of realizing that I would love Felipe to be his own version of Captain Awesome. Be physically fit, travel, be daring in life, intelligent, and kind. The whole physically fit part was in question for now, can he do contact sports? can run? can he walk? And Felipe's progress had given me hope in the direction of a "yes!" I will continue to pray for that hope and healing. However, even if he is healed, Felipe's "Captain Awesomeness" needs to have an example of "awesomeness" from his parents. I haven't been on a bike in years, why do I think he is going to be biking to and from work? biking along the mountains of the alps? biking on the trails before going camping?! lol So despite the usual waste of time TV watching can be, especially watching over 90 episodes of a series, this show pointed me in the direction of getting healthier and more adventurous so that I can be an example for Felipe. While Felipe is going through his rehabilitation of learning to walk, then I will learn to be more "awesome."
I'm determined to start with a bike. Getting a bike and getting a little baby seat for Felipe to have a front view and experience the joy of wind in his hair. While its a goal right now, I'm without a bike, helmet, baby seat or space to put said bike. However, as God has provided me while being out on leave, if its adventure worth beginning, things will sort themselves out. I have faith :)
Here is to being Awesome despite not always having awesome news.....ciao ciao
Thursday 31 July 2014
Wednesday 30 July 2014
Sleepy Baby...
Felipe did not nap yesterday, which was pretty difficult considering that I was sick and I didn't have the same energy as I usually do. Once Herminio came home, he cuddled up to him and passed out. Out like a light, no fair!
Needless to say, I didn't get a chance to rest or recover from a bad summer cold.
Its important for Felipe to sleep, it will help him recover, get stronger, etc. Also, I would like to have at least 30 minutes to do some house hold chores, workout, or cook. I started a food and exercise program in May, where the emphasis is to make sure the food is "clean" or in other words unprocessed and fresh. I've started to make bulk food days, cooking a lot, packaging the food for Herminio to take to work and for me and Felipe to have during the day. This has helped in cutting back in the amount of time I have to spend in the kitchen on at least 3 days. Bring food from home has significantly helped reduce extra costs in the home as well! The added benefit is that both Herminio and I have lost weight, gained some additional energy and we are setting a better example for Felipe.
Felipe doesn't have to loose weight but he needs to learn to like the healthy food now, and not struggle like myself, learning to like veggies. I'm proud to say that Felipe really enjoys his asparagus, broccoli and beans. Although lately he loves his grapes and blueberries. He is particular about his Yogurt, he likes Greek Yogurt either Chobani or Face but it has to be with fruit on the bottom. While I know that plain yogurt is healthier, I haven't developed the taste for it yet. I aim to phase out the fruit-at-the-bottom yogurt and replace it with fresh fruit w plain yogurt. Slow and steady....
The acupuncturist has suggested to remove all milk products. For now, Felipe is trying out milk alternatives. He has tried Almond Milk, Rice Milk and Coconut milk. He likes them all but not as much as regular whole milk. We are still working on getting Felipe to drink out of a cup for the majority of his liquids. Felipe has seen me drinking water from a bottle and so he just wants to drink out of the bottle. Sometimes this results in impromptu baths by Felipe, spilling so much water on himself. Same goes with the yogurt, but slowly, he is getting more coordinated.
Needless to say, I didn't get a chance to rest or recover from a bad summer cold.
Its important for Felipe to sleep, it will help him recover, get stronger, etc. Also, I would like to have at least 30 minutes to do some house hold chores, workout, or cook. I started a food and exercise program in May, where the emphasis is to make sure the food is "clean" or in other words unprocessed and fresh. I've started to make bulk food days, cooking a lot, packaging the food for Herminio to take to work and for me and Felipe to have during the day. This has helped in cutting back in the amount of time I have to spend in the kitchen on at least 3 days. Bring food from home has significantly helped reduce extra costs in the home as well! The added benefit is that both Herminio and I have lost weight, gained some additional energy and we are setting a better example for Felipe.
Felipe doesn't have to loose weight but he needs to learn to like the healthy food now, and not struggle like myself, learning to like veggies. I'm proud to say that Felipe really enjoys his asparagus, broccoli and beans. Although lately he loves his grapes and blueberries. He is particular about his Yogurt, he likes Greek Yogurt either Chobani or Face but it has to be with fruit on the bottom. While I know that plain yogurt is healthier, I haven't developed the taste for it yet. I aim to phase out the fruit-at-the-bottom yogurt and replace it with fresh fruit w plain yogurt. Slow and steady....
The acupuncturist has suggested to remove all milk products. For now, Felipe is trying out milk alternatives. He has tried Almond Milk, Rice Milk and Coconut milk. He likes them all but not as much as regular whole milk. We are still working on getting Felipe to drink out of a cup for the majority of his liquids. Felipe has seen me drinking water from a bottle and so he just wants to drink out of the bottle. Sometimes this results in impromptu baths by Felipe, spilling so much water on himself. Same goes with the yogurt, but slowly, he is getting more coordinated.
Tuesday 29 July 2014
1st Sessions with Speech Therapist and Special Instructor
Special Instructor (SI) is a very sweet and caring woman who has been working with children for over 30 years. She is has two masters and a PHD in the area of special education. Her role is to help Felipe learn how to play, expand his attention span, and help with his behavioral problems. I will be pleased when he doesn't treat me like his personal chew toy. The first session, she reviewed the importance of getting toys that require multiple steps, like pop up toys. It will keep him engaged and it will require him to take the time to figure out the steps and repeat the actions. Felipe had fun. I'm not sure what the long term outcome will be, but I'm willing to try!
Speech Therapist has also been working with kids for a long time. She speaks pretty fast and has a lot of intonation in her voice. Felipe has been saying some words, like car. He points to every moving object and says Car. The ST says to say, yes a "car", yea, its a truck" to reinforce that I heard him say car, and then teach him the appropriate word. He calls balls and grapes that same, "ba" So she said, to say, "ba? yes Grapes GRRRR APES." She said to avoid conversations, keeping sentences short and repetitive. She had a luggage full of toys, I gotta admit, I'm not sure who was more curious about her toys Felipe or me! She had a mic and she would say a word and pass the mic to Felipe. He was shy at first, but he tried once or twice to mimic the words she was saying. She also suggested to place two items in front of him and help him make a "pointer finger" to indicate which one he wants. Then repeat the item that he selected. The idea is that he practice pointing at objects when he wants them. Right now he points in a general vicinity but its largely guessing on my part to find out what he means. He enjoyed playing with her and the 30 minute session flew by!
So exercises to do on our own this week:
1. Find toys that require multiple steps, easy puzzles and a mic
2. Reinforce words that Felipe has begun to use for general items, "ba-ball-grapes" etc.
3. Sing with gestures Twinkle twinkle little star while in high chair during meals.
Speech Therapist has also been working with kids for a long time. She speaks pretty fast and has a lot of intonation in her voice. Felipe has been saying some words, like car. He points to every moving object and says Car. The ST says to say, yes a "car", yea, its a truck" to reinforce that I heard him say car, and then teach him the appropriate word. He calls balls and grapes that same, "ba" So she said, to say, "ba? yes Grapes GRRRR APES." She said to avoid conversations, keeping sentences short and repetitive. She had a luggage full of toys, I gotta admit, I'm not sure who was more curious about her toys Felipe or me! She had a mic and she would say a word and pass the mic to Felipe. He was shy at first, but he tried once or twice to mimic the words she was saying. She also suggested to place two items in front of him and help him make a "pointer finger" to indicate which one he wants. Then repeat the item that he selected. The idea is that he practice pointing at objects when he wants them. Right now he points in a general vicinity but its largely guessing on my part to find out what he means. He enjoyed playing with her and the 30 minute session flew by!
So exercises to do on our own this week:
1. Find toys that require multiple steps, easy puzzles and a mic
2. Reinforce words that Felipe has begun to use for general items, "ba-ball-grapes" etc.
3. Sing with gestures Twinkle twinkle little star while in high chair during meals.
Time Flies....
....I haven't updated this blog in a while partially due to the progress that Felipe has been making. Felipe's new therapist is using the Cuevas Medeck Exercises to building up muscles and improve his ability to hold himself up. The first 2 weeks, he cried throughout every session. It was hard to witness but the results were almost immediate. Felipe began to hold his chest up, more upright, he began to feel more confident in kneel walking. Kneel walking is key bc it uses all the muscles to walk and it also means he is bearing his weight on his hips. Felipe still going to the gym on Monday and Fridays and during this time is when we could really guage the difference in performance. He is holding himself up with the braces, he is taking side steps to explore his space.
While we are making progress in one area, we are slowing loosing control in the area of behavior. He is biting more, he is smacking and even once tried to kick me away. (I have to say I didn't mind the kick, bc it is showing a sign of strength where he used to be weak). I submitted a request for evaluations. They evaluated him for Speech (ST) and Special Instruction (SI). The evaluators both suggested Occupational (OT) evaluation so that they can rule out any sensory issues.
He qualified for ST, he is speaking more at an 10-12month old level. He also qualified for SI, he has behavioral issues that could stem from not being able to communicate and also from the trauma of so many hospitalizations/pain. There was a few weeks wait as the evaluations, reports and paperwork were submitted. However he was approved for ST 2x a week and SI 1x a week. He was denied OT bc the evaluator thought that his fine motor skills were above average. (he throws objects like no other! and has good aim has he frequently bopped the evaluater on the head w the toys). However, after speaking w the PT, he thinks that Felipe should be receiving OT due to his upper body weakness. We will ask for a reassessment in a few months.
At first I was annoyed that the PT withheld his opinion on the OT until after the rejection but realistically he is boarderline weak at his age group. So there is still the possibility of being rejected. Additionally, Felipe now has 2 additional services to coordinate and having a little time before another one is scheduled might be a good thing.
So we are folling up with accupunture every 2 weeks, just to make sure that he is doing well in terms of his digestion and to see if any improvements have been made. I think it has been useful for him and in combination with the new physical therapy style, Felipe has improved significantly.
As for his kidney and other development, his appointment has been rescheduled to later in August, so we can gather the baseline results at that time.
I"ll schedule in some time to update more frequently. Next steps are to 1) find an OT that is covered by his health insurance and 2) schedule an appointment with Ortho sooner to reevaluate his hips and what needs to be done.
Until then, thank you for support and prayers.
God Bless
While we are making progress in one area, we are slowing loosing control in the area of behavior. He is biting more, he is smacking and even once tried to kick me away. (I have to say I didn't mind the kick, bc it is showing a sign of strength where he used to be weak). I submitted a request for evaluations. They evaluated him for Speech (ST) and Special Instruction (SI). The evaluators both suggested Occupational (OT) evaluation so that they can rule out any sensory issues.
He qualified for ST, he is speaking more at an 10-12month old level. He also qualified for SI, he has behavioral issues that could stem from not being able to communicate and also from the trauma of so many hospitalizations/pain. There was a few weeks wait as the evaluations, reports and paperwork were submitted. However he was approved for ST 2x a week and SI 1x a week. He was denied OT bc the evaluator thought that his fine motor skills were above average. (he throws objects like no other! and has good aim has he frequently bopped the evaluater on the head w the toys). However, after speaking w the PT, he thinks that Felipe should be receiving OT due to his upper body weakness. We will ask for a reassessment in a few months.
At first I was annoyed that the PT withheld his opinion on the OT until after the rejection but realistically he is boarderline weak at his age group. So there is still the possibility of being rejected. Additionally, Felipe now has 2 additional services to coordinate and having a little time before another one is scheduled might be a good thing.
So we are folling up with accupunture every 2 weeks, just to make sure that he is doing well in terms of his digestion and to see if any improvements have been made. I think it has been useful for him and in combination with the new physical therapy style, Felipe has improved significantly.
As for his kidney and other development, his appointment has been rescheduled to later in August, so we can gather the baseline results at that time.
I"ll schedule in some time to update more frequently. Next steps are to 1) find an OT that is covered by his health insurance and 2) schedule an appointment with Ortho sooner to reevaluate his hips and what needs to be done.
Until then, thank you for support and prayers.
God Bless
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