Saturday, October 1, 2011

Not Alone

Slowly fading away
You're lost and so afraid
Where is the hope in a world so cold
Looking for a distant light
Someone who could save a life
You're living in fear that no one will hear your cries
Can you save me now

I am with you
I will carry you through it all
I won't leave you I will catch you
When you feel like letting go
Cause you're not, you're not alone

Your heart is full of broken dreams
Just a fading memory
And everything's gone but the pain carries on
Lost in the rain again
When will it ever end
The arms of relief seem so out of reach
But I, I am here

I am with you
I will carry you through it all
I won't leave you I will catch you
When you feel like letting go
Cause you're not, you're not alone

And I'll be your hope when you feel like its over
And I will pick you up when your whole world shatters
And when you're finally in my arms
Look up and see love has a face

I am with you
I will carry you through it all
I won't leave you I will catch you
When you feel like letting go
Cause you're not, you're not alone

And I will be your hope
And I will pick you up
And I will be your hope
And I will be your hope

Slow fading away
You're lost and so afraid
Where is the hope in a world so cold

Tuesday, August 9, 2011

Music Makes the World Go Round

Paxton had another Kindermusik class this morning. This was his second time going to this interactive music class. The nice thing was that Scott was able to join them today. Susanne was interested to see if he thought this would be a good addition to Paxton's repertoire of appointments or not.

Once they got inside, it was nice to see some familiar faces. The same six children were present for this class that were present for the last class. The theme for the summer classes was "Creatures of the Ocean". With today's class, there were various songs that they sang, different instruments that they played, a huge parachute to bounce a beach ball around on, and sign language that they learned. They also had storytime and special time for cuddling to help wind everyone down at the end. This just happened to be Susanne's favorite part. She sure loved her snuggle time with the bug.

Scott seemed to enjoy himself. He could see the excitement in Paxton's eyes watching all of the children move about and make noise. He also could see that Paxton responded so well to the singing and music. With Paxton's facial expressions alone, they both knew that he was benefitting from this type of interaction and socialization. They were going to seriously consider signing him up for the fall classes.

Monday, August 8, 2011


Paxton had a speech therapy appointment at Inova Farifax Hospital Rehabilitation Center this morning. This was his fourth visit and things had been going really well. Susanne was beyond thrilled with the progress he was making thus far.

Susanne could tell that Paxton was tired when they arrived. She was hoping that it wasn't like last week, which definitely hindered his performance. It was such a difficult thing to try to figure out an ideal schedule for all of the appointments Paxton required and not interfere with his nap schedule. It just wasn't going to happen. He was a fighter though and tended to push through his sessions regardless of his state.

While they were waiting to get called, Susanne noticed a sign that said there were free books available for the patients of the Rehabilitation Center. Susanne decided to skim through the pile to see if there was one that would be perfect for Paxton. She was ecstatic to find that the most memorable book from her childhood was sitting right in front of her. She could recognize the black and white checkerboard cover anywhere. It was "The Real Mother Goose" book. She remembered her father reading it to her a lot as a child. It had been a special gift from her Grandmother that they both cherished. She smiled at the memory of her Grandma and the joy she brought to Susanne's life. It brought tears to her eyes when she realized she had found the book that she thought she would never see again. It was funny how things worked out sometimes.

The session started with all of the usual oral motor exercises to wake up Paxton's mouth. He seemed somewhat irritable, but tolerant of what was going on. When it finally came time to feed him solid food, he wasn't feeling it at all. He managed to get down a few spoonfuls of pureed squash before having a total meltdown. He did recover nicely once he was in his mama's arms. The rest of the session the therapist spent playing peek-a-boo trying to get him to anticipate what she was going to do. He acutally caught on quickly and started laughing before she said the magic words. They also worked on object permanance. The therapist encouraged Susanne to show Paxton an object and then hide it partially so that he could see that it was halfway gone. This way they could start to teach him that just because an object is hidden, it doesn't mean it had vanished into thin air. The goal was to get him to eventually look for an object once it was removed from his line of sight. Susanne looked forward to practicing this over the course of the week.

The next appointment was with the new occupational therapist that Paxton had met with for the first time last week. This was set up through Children's National Medical Center at one of their satellite clinics. Today, the therapist started Paxton out on a bolster, which was a long, narrow foam cushion. He was able to work on tummy time in a different fashion than he was used to, which was exciting. The therapist also rolled him from side to side on the bolster, which allowed for him to engage numerous muscles when trying to right himself. He was surely going to get stronger from these exercises.

The therapist determined that Paxton's center of gravity was pretty high up his back. Her goal was to transition this location down lower over time. A lot of the session was spent with Paxton in her lap. She worked with him in the different positions he would go through to go from laying down on his tummy to sitting. She indicated that it was important that he work a lot on a dynamic surface instead of a static surface so that more of his muscles would be activated. It would strengthen his core and stretch out the muscles that he wasn't necessarily used to using. If he always worked on something like his wedge, the floor, or boppy, then he wouldn't get the same opportunity to feel that give and take with the movement. The therapist had Susanne sit on the exercise ball and lift her legs and try to maintain her balance. This was so that Susanne could get a sense of how hard Paxton's muscles were working even when it appeared like an easy task. Paxton rarely put weight through his feet when sitting on Susanne's leg so it was the equivalent exercise as what Susanne did on the ball. It was shocking how difficult it was for Susanne to do that for minutes. It gave her a whole new perspective on how hard this little guy was working just to do simple things like sitting.

The last exercise they worked on was similar to what they had done in the speech therapy appointment earlier. She wanted Paxton to anticipate what she was going to do before she did it. She did this through working on protective extension of his arms. She would prep him for falling to one side or another by saying, "AH, AH, AH....BOOM!!" His arms would be placed down on the ground to catch him from falling. He eventually caught on the verbal cues and anticiapted his hands being placed on the ground. It was so cute to see his face light up with excitement for what was about to happen. He was definitely getting stronger every week. Once again, the increase in his therapy services as well as Susanne being available to work with him 24/7 really made a huge difference.

Friday, August 5, 2011

The Wise and The Foolish

Matthew 7:24-27

"Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock. But everyone who hears these words of mine and does not put them into practice is like a foolish man who built his house on sand. The rain came down, the streams rose, and the winds blew and beat against that house, and it fell with a great crash."

Thursday, August 4, 2011

It's Paying Off

Paxton had a physical therapy appointment bright and early this morning. For once, he was wide awake for about thirty minutes before the therapist arrived. This worked out really well because he was able to wake up slowly, get his gagging episode out of the way, and clean his system out completely...and I mean COMPLETELY! This was so much so that he required a total outfit change in addition to a clean diaper.

Today, Paxton proved that he continued to get stronger and stronger. It was so rewarding to see that the increase in therapy services had really proven to pay off. Everything from his head control, core strength, ability to prop sit, rolling over, and resistance had improved. The new skill for today was having him stand up by providing support by having his back lie against the exercise ball while Susanne supported his upper body and the therapist supported his legs. It was so odd to see him in this position. It made him look like such a young man.

Paxton got a short cat nap in before his next therapy appointment. Susanne had to wake him up this time right before the session which he was not thrilled about. The occupational therapist decided she wanted to work on oral motor skills. Susanne started with facial and oral massage. Once his cheeks and mouth had woken up, she started with rubbing his gums with his nuk brush. Since he was teething, he invited this with no hesistation. Susanne then introduced an oral swab with water. He was out of control. He allowed Susanne to place the oral swab straight in his mouth and he was suckling with such strength. His ability to form suction around the swab was an impressive new skill. Susanne couldn't wait to show his therapist the improvements he had made with eating pureed food over this last week. It was merely finding a specific flavor that he was interested in. Paxton didn't eat the pears with cinnamon and oats as vigorously as he had on Monday, but he still did a fantastic job. He took about ten spoonfuls of the pureed food before becoming fatigued. He had really picked up on opening his mouth when cued. This helped Susanne to believe that he was understanding some of what she had been saying over and over for the last year. For the first time, he allowed the spoon to go past his teeth and closed his lips around it. He was still a little apprehensive about the food at first, but he still used his tongue to explore the food and eventually swallow it. He was becoming much faster at this skill and less guarded. They finished the session with brushing his teeth. He absolutely loved the finger brush pushing against his gums. It provided such relief for the teeth that were erupting through the gums. Susanne really thought he could have her sit there and do that all day.

Paxton was very talkative throughout the entire therapy session. Susanne noticed that he had added a new sound today. He was saying the "N" sound. She just hoped this didn't mean he was on his way to learning the word "no". She quickly reminded him to continue practicing his "M" sound so that "mama" could be his first word. She thought he at least owed her that. :)

Later that day, Susanne read Paxton a series of books. She had started to focus on the touch and feel books so that he could explore the pages with his hands. He seemed to take a liking to them really quickly. This was another area where Susanne had a word to prompt a certain response from him and he would do it. She would simply say, "Can you touch it? Touch, touch, touch" and he would reach out with his little hand and rake his fingers across the pages.

Wednesday, August 3, 2011

Just One of Them Days

Susanne had to get Paxton up and out of the house before 7:30am. This was rough for both of them. Paxton had a speech therapy appointment this morning with a new person at a different hospital. Susanne was having to try to piecemeal his therapy scheudule together since she couldn't find one facility that was willing to see him more than once a week.

Susanne arrived with ten minutes to spare. After unloading Paxton, securing him in his stroller, and gathering all of their multiple bags, she realized she had parked in a reserved parking space that required a parking pass. She had to reload everything and try again. She found another parking space within minutes. She repeated the above process. After getting inside the building, she was confused. She needed to get to the fifth floor, but this building only had two levels. She called the number to the clinic to figure out what was the problem. She was informed that she was in the wrong place. She had gone to the Physician's Offices I, but she needed to be in Physician's Offices II. Of course, this building was on the opposite side of the hospital. Back to the car she went to start over. It didn't help matters that it was raining. By the time she got to the correct location, she was now ten minutes late.

The speech therapist came right out to get them. She read over his order for services that was from Paxton's pediatrician. She quickly informed Susanne that the order was missing something. Instead of saying Paxton needed an evaluation and treatment for speech and feeding therapy, it just said speech therapy. She told Susanne that she would not be able to work on feeding with Paxton today because of the incorrect information. This put Susanne over the edge. She couldn't fight back a tear that was insistent on coming out. The therapist finally agreed to continue the assessment.

She spent the first thirty minutes getting a history from Susanne. This sometimes frustrated her especially when she would spend the entire night before the appointment filling out the fifteen page history form with all of the SAME information on it. Needless to say, there was a lot of talking, but not a lot of therapy. Better luck next time.

Susanne got home just in time to put Paxton down for a quick nap before his pediatrician's appointment at noon. He was going in for his 18 month check-up appointment. Where did the time go?

Paxton was looking good. He was still right at 25 lbs. This placed him in the 35th percentile for his weight. He measured at 32" long which put him in the 45th percentile for his height. This was a MAJOR improvement from not too long ago when he was in the <5th percentile for both. Dr. Lynn checked his iron level which came back normal. She agreed with the gastroenterologist that it was a good time to discontinue the vitamin supplement with iron. This was music to Susanne's ears. It felt nice for once to be able to subtract something from Paxton's regimen instead of adding something. The pediatrician also approved the proposed changes for Paxton's feeding schedule. This was going to be a slow process to increase the amount fed while decreasing the rate it was given. His fontanelle had almost completely closed so Susanne would have to figure out another way to observe him for fluid overload. He didn't end up receiving any vaccinations, but he would have to come back within the next three months to update his immunizations.

By the time they got home, Paxton was exhausted. He went right down for a nap and tried to recover from the chaotic day.

Monday, August 1, 2011

Ain't No Thang!

Paxton had two appointments today. His first one was with one of his speech therapists. While sitting in the waiting room, Susanne read Paxton a book. During the middle of it she realized that he was breathing a little heavier than usual. He also seemed irritable. She could tell that he didn't feel well for some reason. She knew he was tired, but he also seemed quieter than normal. She was worried, but could only monitor him for now.

Once the appointment started, the therapist decided to try some new things. She started with a vibe critter, which was a vibrating teether that helped to stimulate his mouth. Paxton willingly opened his mouth and really seemed to enjoy it. This was definitely going on Susanne's wish list for Paxton along with the Johnson Therapeutic textured spoon. The therapist then tried to offer a pacifier that had a textured nipple. He actually let the entire pacifier go into his mouth and he closed his lips around it. There was some minor suckling, but nothing consistent. This was very impressive. She then moved onto the nuk brush which he also was receptive to. He mastered that exercise rather quickly so they moved onto feeding him pureed food. Today, Paxton got to try a new flavor, which was a mixture of pears with cinnamon and oats. He LOVED it! He acted like it ain't no thing. Susanne had never seem him open his mouth and swallow anything so quickly. He was moving his tongue more than ever trying to taste every morsel that was introduced. At one point, it almost looked like he was reaching for the spoon that was presented to him. He probably took close to 12 tiny spoonfuls. Yay for little victories!

Paxton had been crying on and off throughout the entire appointment, but still held up pretty well until the end. They had to cut the appointment short because he was exhausted. The only thing that helped him to hang on as long as he had was his baby buzzer and an oral swab. Every time he was out of sorts, Susanne was able to hold him and comfort him. She hated seeing him so unhappy. She wished that she could take him home right after their session, but that was not the case. He had one more appointment to go.

Paxton met with a new occupational therapist today through Children's National Medical Center. This was the first time that Susanne had been to a therapy appointment where there were multiple children and therapists. Susanne quickly became overwhelmed with the sight she saw. There were multiple children that were suffering from chronic issues. Some couldn't walk well and others couldn't use their arms well. The only thing that brought a smile to her face was that the children were all so positive.

The occupational therapist did an evaluation on Paxton and then told Susanne some new exercises to try with him. She wanted him to have a baton that was clear and filled with glitter to have him hold onto while he extended his shoulders by bringing both arms beside his head. He was SO BIG! He loved the work they did on the exercise ball. He really seemed to settle once he was on that. Susanne could tell he was overtired. He almost fell asleep a few times during therapy. He didn't appreciate the interruptions when he would try to doze off. The therapist revealed that she was trained in massage and would like to teach Susanne some techniques that might benefit him greatly. She couldn't wait.

Susanne was slowly, but surely having success with increasing Paxton's therapy requirements. She wasn't sure she would make it to 10 hours of therapy per month, but she was going to die trying. He was that important.