Monday, April 27, 2009

Frustration, worry and good news!

I will start with the frustration because I love to end things on a good note. I patch Randy's eyes alternating each eye each day. Well the last few weeks has been a nightmare trying to keep the patch on. He did well at first; barely making a fuss except when it was time to take it off. Lately, he has taken off his patch several times a day; especially his right eye. The nurse at the office suggested putting socks on his hand when he pulled the patch off. Put the patch back on and take the socks off after a while. This would teach him a consequence for pulling off the patch. Well I tried it. He looked at the socks and put them in his mouth and smiled like "I like the way this feels". Then about ten minutes later, he took the patch off with the socks on his hand!!

Now the worry comes into play because he takes the patch off and puts it in his mouth. I was taking a bath (instead of a shower so I could hear him) and put him in his crib with toys. I left the bathroom door open (I know, but what's a mom to do?). It got too quiet so I jumped out the tub and walk in his room to find the patch off his eye and in his mouth. He could easily choke on this. I am at my wits end. I will have to stare at him for four hours straight so that he can get his patching time.

Now the good news. Randy rolled from stomach to back!!!!!!! This is huge. The therapist and I think that once he masters this, he will take off. He has been rolling from back to stomach for about 4-5 months. Once he started sitting up in February, it seems like he hit a wall. He has not hit anymore milestones since then.

I will include video clip as soon as my daughter gets home with her camera.

I'm taking suggestions for the patching dilemma.

Friday, April 24, 2009


"So I pray for wisdom and the ability to discern between caution and irrational fear."

This was the last sentence of my post on Tuesday, March 31st. Well....I gave in to fear. I'm just not sure if it was irrational or not.

I had planned to go on a trip 12 hours away from home. I looked up the local hospitals and found out which one's had trauma centers. I grabbed my book with his lists of surgeries and diagnoses. I had the CD with his four latest MRI's. was not enough. As the date got closer, I began to panic. I had horrible dreams that he had a shunt infection and had to be externalized and given a 21 day course of antibiotics and we are 12 hours from home..... So I decided we would not go. Then I felt bad for giving in to the fear. So I would talk myself into going again, and the panic set back in. It was a vicious cycle.

My friend from work told me that I have to remember that even though Randy went through all the physical pain, I went through the emotional pain. My other friend told me that I need to take baby steps. Maybe start with a trip four hours from home and work my way up.

My biggest fear is that I will hold onto this fear for an unreasonable amount of time and keep Randy from experiencing the world. Or worst, I may put my fears on him. I do NOT want to do that to my son.

So I sit here typing in my pj's at home instead of being out of town. So once again, I pray for wisdom and the ability to discern between caution and irrational fear.

Just some random pictures

Monday, April 20, 2009

Therapy, therapy, therapy

Long story about therapy.

Randy was let go by the company that did OT and PT in our home. This all happened about six weeks ago. They were having staffing issues. The original OT quit in November and was replaced with an OTA, and the original PT retired in February and was replaced with a PTA. The OTA quit, and they were unable to find anyone to take our case. I think we were low priority because Randy is not home bound, and I expected them to come on time or call.

Anyhoo, I was very upset. I called Children's hospital for an evaluation and services. I made this call on March 31st. They could not get him in for an evaluation until May 13th and told me there was a ONE YEAR waiting list for afternoon or evening appointments; but that I they could schedule me sooner if I wanted a 9a or 10a appointment. That sounds great for the SAHM or the moms that work second or third shift; but a large number of working moms work first shift.

So....I asked them about some other places and they gave me a couple of referrals. I took him to this place that is near my home. They are a center for children and adults with needs. They have a hearing center, therapy, respite care, and child care. They scheduled his evaluation within 3 weeks. The last evaluation was today. The scheduler will be calling me tomorrow to set up his appointments.

Speech: The speech pathologist asked me a lot of questions about his expressive and receptive language. His receptive language is higher than his expressive language. She was pleased with his babbling. I was surprised that his lack of mobility affects his speech. For example, she asked if he responded when we told him "no". We don't have to tell him no because he is not mobile. So we need to make sure we are using words with him all the time. She also looked at the way he took his bottle and ate (puffs). She noted his weak suck and the fact that he worked hard to eat. She liked his chew and said that he "laterilizes his tongue". She said that he could definitely qualify for speech, but gave me the option (almost suggested) that we wait 6 months and let the OT work on feeding. She felt that we were doing all the right things at home: talking to him, reading, giving words to his actions, etc...

OT: The occupational therapist was fabulous! She introduced herself and told me she has a masters degree in her field and specializes in patients with neurological issues and babies. YAY!!! She played with him and asked lots of questions. She had already spoken with the speech therapist and watched him eat too. She asked me to take off his shirt so that she could see the way his body moved. Now in all the months of home therapy he's had, they have never done this. She noted that his left side was higher than his right. She put his fine motor skills at 5-6 months, and his cognitive motor skills at 6-7 months. She suggested therapy 2x per week.

PT: The physical therapist had already talked to the OT, and we reviewed some of the things they had talked about. She took off all his clothes and examined his movements very thoroughly. She rotated his ankles, legs, hips, and torso. She noted that he definitely prefers his right side. She says he is definitely weak in his trunk, hips and ankles. Good news.....both the OT and PT said he has good range of motion and that they feel that his weakness is muscular skeletal and NOT neurological! That felt good to hear. I am praying that this means no CP in his future. She recommends therapy 1-2x per week.

So we will be busier soon. I'll keep you posted.

Sunday, April 12, 2009

Happy Easter!

Randy and big sister Lynnze

HE gave his life for theirs....What a marvelous thing!

Friday, April 10, 2009


We had to fill out an insurance application at our job because they are shopping to see if we can get a better rate. We will probably get denied based on my child alone. Thank God for insurance. The form asked me to list our medical conditions; one for my husband, one for me, none for my daughter, and a laundry list for Randy. Since I created the list, I thought I would share with my blog family and friends since I have not talked about them all in the blog.
  • Hydrocephalus; valveless shunt
  • Milk soy protein intolerance (MSPI)
  • Reflux (GERD)
  • Amlyobia
  • Strabismus exotropia
  • Mild hearing loss-left (or so they say)
  • Gross and fine motor delayed

So the next time I bring up a doctor and/or treatment, you won't think, "I didn't know he had that?" I was excited to see that the currently list is getting shorter. There are so many other diagnoses that have RESOLVED behind them. My prayer is that the list above continues to get shorter and that I can continue to write the word "resolved".

Tuesday, April 7, 2009

Vision therapy and new specialist

We have the pleasure (smirk) of adding another specialist to Randy's list; ENT (ear, nose, and throat). This referral came from his failed hearing exam. They want to find the cause of the supposed hearing loss. I am still not convinced there is hearing loss, but I'm not sure enough not to follow through with the referral. I do believe he has some fluid that may be building up behind his ear. This could account for the stuffiness that he has at times, and the breathlessness he presents when he is drinking his bottle.

The vision specialist came to work with him today. She says that she sees improvement in him since she assessed him last month. It's kind of cool that she works with him because she is also visually impaired. She puts toys to his face and different black and white photos. She says that these help strengthen his eyes. She made me feel good because she said she could tell that I was patching him faithfully. I'm not one that needs a cheerleader often, but I really needed to hear that. I have been feeling like I'm not doing enough to help him progress.

He seems to have hit a wall with his physical development. He is still sitting and rolling from belly to back, but not much else. He's been doing this for almost two months now. The vision therapy believes it is related to his vision. She is going to get a book for me that deals with movement in the visually impaired. She is also going to work with the physical therapist from early intervention.
Speaking of early intervention; I must say that they have been wonderful!!! My specialist is always on time, bring me lots of goodies to work with Randy, and listens and acts on all my concerns. They come out 2-3 times per month; I wish it was weekly.

The last thing they did with Randy was vestibular motion. This is supposed to help him with righting reactions and trunk control. He LOVED it. He smiled and laughed. He even fussed when she stopped. They talked about getting a bowl that I can keep at home so that I can give him this motion regularly.

Saturday, April 4, 2009

1 year old pictures

I took Randy to get his pictures taken. I forget how small he is and how young he looks to others. The photographer was setting up for his pictures and she put the little reclining foam with the fabric over it. You know the pose they use for little babies. I said he can sit up. She look surprised and said, "How old is he?" I said twelve months and she wrinkled her eyebrows.

She then took away the reclining thing and set it up for a sitting pose. Of course I think all the pictures are adorable. I will post them when I get them back in a couple of weeks.

A good thing happened while taking the pictures. I stood behind the photographer to try to get Randy to smile; I was about 4-5 feet away. I gave him huge smile and he gave one back. Now we always do that, but we are usually face to face. I was so impressed he could see me from that far away!!! His eyes are getting stronger and his vision is improving.

My prayer is for God to remind me to see the glass as half full instead of half empty.

Wednesday, April 1, 2009

Audiology clinic

Randy visited the audiology clinic at our children's hospital. He had to get a hearing evaluation. This is the third evaluation for him. Before leaving the NICU, he was given a newborn hearing screening. It is not uncommon for preemies to have hearing loss stemming from their extreme prematurity and even some of the interventions that were used to save their lives.

Randy failed his initial screening in his right ear. I had to take him back to get an evaluation about a month after he was released form the NICU. This time he passed with flying colors, and I was told to bring him back when he turned 1.

Well we went today. They first tested how his eardrum moved; the right one moved great, the left one did not move very well. She said that it could mean that he has fluid behind that drum. Then, they put these probes in his ear and sent different sounds at different levels and pitches. They then looked for responses such as him looking in that direction or a change in his behavior in reaction to the sound. The room has these light up Disney characters in the corners. The lady kept saying things like "You see piglet? You see Minnie?" I wanted to tell her, "didn't I tell you he can't see far? And he doesn't know who Minnie or piglet is!"

The results were fair. The right ear is within normal range; the left ear tested slight hearing loss. She said it could be from fluid in the ear. She's not sure. I have to bring him back in 4 months.

Personally, I'm not convinced there is hearing loss. I think that he just does not process as quickly as they were expecting, and did not react to the sounds in the way they anticipated. I believe it is more developmental than hearing. Time will tell.

So....I leave there kind of frustrated. I kept thinking about the serenity prayer:
God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.