Speech Evalution, PT, and Feeding

Warning: This is going to be a long post.

Speech Evaluation: Randy finally received the speech evaluation that was ordered by his pediatrician in October. I think that initially the scheduler forgot, then he was out for surgery. This is the second evaluation he has received. The first on was in late March. The ST suggested that we wait for speech and concentrate his therapy time on PT and OT and feeding (he does feeding with his OT). Well I am anxious to get his speech started because his OT is pregnant with twins and is high risk. She has already sent Randy to someone else for his developmental therapy due to lifting restrictions, so I wanted his speech therapist to be able to step in with his feeding if she was suddenly put on bed rest (I know that can happen in the blink of an eye).

Although Randy does not have a lot of words, I realize that he communicates with us pretty well. If he wants to play, he grabs your hands and starts to clap. If he is hungry, he has this shrill kind of whiny cry that is very distinctive. He can ask you to pick him up. And he certainly has the words "all done" and "bye-bye" perfected. He speaks this gibberish, but I know in his mind he is truly trying to communicate. He uses inflection and different tones of voice depending on what he is trying to say. I think he just truly cannot make certain sounds.

He certainly understands most of what you tell him. Amy, the ST, asked me if he would retrieve items upon request. I told her know. Well, later that week, I thought about I would see if he would retrieve something. I was sorting clothes in the hallway and asked him to go get me a toy. He quickly crawled away and came back with this:

I was so impressed with my baby. I think he does not retrieve items because we do not ask him to. It is amazing the things we naturally don't do with children if they have a motor delay. I'm sure I would have asked him to give me something a million times if he were walking.

The report states that average ability scores fall within a range 90-110. Randy's scores were:

Receptive Language 87/19 (ability score/percentile rank)

Expressive Language 97/42 (ability score/percentile rank)

She is recommending therapy once per week.

Physical therapy: Randy gets all his therapies while he is at daycare. That is actually the main reason he started daycare this year. The upside is that they can adjust his schedule if the therapist will be off on his regular day or any other conflict. The down side is that I do not attend therapy with him. So when I am off work, I try to attend. They changed his regular Friday session to Monday due to the holiday.

Randy is officially crawling on all fours, and almost never belly crawls anymore. Bobbie, his PT, is working on him pulling to stand, cruising, and bearing weight for longer periods of time. Well while she is working with him, he is being the little stinker that he can be at times. He is rolling around when she wants him to stand or buckling his legs. She then starts to tell me how he has been very uncooperative since he returned from surgery and that his lack of cooperation is going to impede his progress. She says that the classroom teachers are having problems with his behavior and that he is biting other children. I am pissed!!!! I'm not mad because she is telling me these things, but I am mad that she is saying something instead of the classroom teachers. I am mad because I have emailed her on several occasions telling her how I want and need feedback from his sessions. And then she hits me with this!! Like she's at the end of her rope! Like this is some huge problem that needs to be addressed ASAP! Why didn't she email or call me when it was a small problem??

So I tell her that I had no idea that things were this bad and that I have been voicing my concerns with feeling disconnected from his therapy since he started daycare. I ask her what can I do to help improve this problem. She says that we need to all be consistent in what we do when he misbehaves or resists. Then the light bulb goes off.... She thinks that we spoil him at home and at the sitters. All the while she keeps giving me this look like "see what I mean" every time he resists or whines or has a meltdown. I tell her we will work on it. She tells me she will ask the coordinator to look at her schedule and try to schedule him late afternoon on one of the days he attends daycare so that I can attend a little more regularly.

Somewhere in the midst of the therapy and drama, I ask her about Randy's future mobility. Age 2 is about the time that mobility and being upright with your peer group becomes more important. The PT feels very confident that Randy can/will walk. She says she is not eager to jump into a lot of assistive equipment the moment he turns two. She is eager to see what the orthopedist recommends in January when he goes to the CP clinic. She says that she will start to put him in a Kaye walker to help him practice the movement of walking. The thought of a chair is not in her mind and I am OK with that.

Kaye Walker

Feeding: Again, because I am off for two weeks I wanted to attend feeding therapy. I planned to attend twice, but had to cancel because Randy was really sick last Tuesday. I have written several times about Randy's difficulty with eating. He really has only a couple of table foods and yogurt and purees. He is growing on his current diet.

I think the PT and the feeding OT have been talking to one another. She said that Randy does not like to be challenged. She said that a lot of that was due to his age. We talked about how much progress he'd made this summer and attributed a lot of this to the fact that I was basically the only one feeding him. We talked about his schedule at school and the adaptations he has to make between the days he's in daycare and the days he is at the sitter and the weekends. She says that consistency is going to be key to his progress. That's when the second light bulb went off.

While we were talking, she fed him some beans. He gave her resistance, but did not cry like he does with me. His feeding therapist has been able to get him to eat things I never could. But, I was surprised to see the small amounts they were considering eating. These definitely do not constitute a meal. I learned how to stretch his cheeks in addition to using the NUK brush. She also suggested buying an electric toothbrush.

So, I have a lot to process about the therapies and what I am going to need to put in place for Randy's continued progress and how I am going to need others to support these goals.

Christmas 2009

Randy had a pretty good Christmas considering he was not feeling well. He was still fatigued, a little feverish, coughing, and had a runny nose. He is still not old enough to rip into presents, but he enjoyed his loot once it was unwrapped and put together.

Dear Santa,

Please take away this cough, runny nose, and fever for Christmas. Mom, Dad, and Grammy can handle the toys.

Love Randy

He looks so good!!!

Do you know how many times we heard this today? At least 5 times. We heard it from the receptionists. We heard it from the medical assistant. We heard it from the nurse. We heard it from the physician assistant. We heard it from TWO neurosurgeons!!!

Randy's post-op visit went spectacular. He weigh 22 lbs 12 oz and he is a tad over 32 inches long. He is "on the chart for both height and weight now" (albeit the 10th percentile). His head measured 45 cm (still not on the chart, but growing). His vitals were good. His reflexes were good. His incision is healing great. He has the go ahead to do anything he wants (although he did discourage me from swimming lesson until the weather breaks).

And the best news of all is that he does not return for another 6 months.

Football with the fellas

Randy and Mommy are sick

I took Randy to the doctor yesterday after work. I was going to just nurse his symptoms at home, but I remembered what the neurosurgeon said to me when he discharged him from the hospital from his last shunt revision. "If he gets sick, be very aggressive. Take him to the pediatrician." I told his pediatrician exactly what the neurosurgeon said. He chuckled. He understands how important it is that Randy does not get a shunt infection.

Randy added a new symptom each day: Friday-rash, Saturday-runny nose & sneezing, Sunday-cough & low grade temp. His ped listened to his lungs and looked at his rash. He said his lungs sound junky, but he did not think it was classic pneumonia. Instead he thought it was RSV and/or Mycoplasma (walking pneumonia). But guess what? His ears looked great. The ped gave him a Z-pack and told me to push fluids, rest, blah blah blah. He did say that I need to call him if his temperature spiked high or if he started wheezing. He also did a swine flu test that he sent to Children's Hospital. I should know those results in a few days.

So on to good news. Randy pulled himself to stand from his knees!!!! He was leaning like a plank against a building, but he did it! He only lasted a few seconds, but he did it!! Sorry I did not get a pic; it happened too fast.

So despite runny noses and coughs, we are all pretty happy over here with this latest accomplishment.

Back at daycare

three days and guess what? Randy has a runny nose! He also has a rash on his back and neck. Do you think their related? Should I be worried? Leave a comment and let me know.

Randy's suspension has been lifted

Randy was suspended from daycare. Not by the daycare; but by the doctor. The neurosurgeon did not want him in daycare after his surgery for fear of infection. He was released to go last week, but the director and I agreed on this week because of the holiday last week.

Randy was beyond excited to go back to daycare. Now he loves his sitter, but I think he likes all the toys at the daycare and the other kids. He began squealing when I pulled into the drop off/pick up area. He was saying ma-ma, da-da, and bye-bye. He almost jumped out of my arms as I was carrying him down the hall way.

The OT emailed me yesterday to talk about his feeding. I told her about all the issues I was having. Well guess what the stinker did? He ate orange and toast for her!! Now he would not eat lunch for the classroom teacher; they had to give him baby food. Am I going to have to go back to school to study occupational therapy in order to get my son to eat table food?

Randy shared his new skill with them; I haven't shared it with you guys. Randy can crawl on all fours!!!! He is crawling on knees about 60% of the time. He is so tickled with himself and I am so proud of him.

Need some feeding advice

I am beyond frustrated in the area of Randy's feeding. Let me preface my complaining (I mean concerns) with the fact that he is getting a decent amount of calories and he is growing and gaining weight. Right now he is 31 inches long and weighs 22 lbs. This puts him in the 1oth percentile for length, but still not on the chart for weight (he's getting awfully close though). Randy needs about 1,000 calories per day. He usually hits this mark through a little planning on my part. He gets two bowls of baby oatmeal that I calorie pack with his formula and prunes; this is 300 calories. He drinks 10-15 ounces of formula per day which is 300-400 calories. He eats one container of YoSoy yogurt which is 100 calories. That only leaves about 200-300 calories left which he gets in the form of baby food, crackers, dry cheerios, chicken nugget, or a sample of some pureed table food I may be able to coerce him into eating.

So what's the problem? Well my son is 20 month (OK, 17 months adjusted) and all of those foods look like they belong to a 9-10 month old. His veggies and fruit are 100% baby food. Chicken nuggets are the only meat he will eat (and MAYBE popcorn shrimp). They have to be certain chicken nuggets too; the outside must be crispy. Fortunately he gets some protein through his formula and he looooves the YoSoy yogurt. He could do a commercial. Once I left it in his bag at my mom's when I left him there and he was digging in his bag and found it. My mom said that he picked it up and held it out and started kicking his feet in excitement.

But I digress..... Another thing that bothers me is that his eating is regressing instead of progressing. In early July he had a list of foods that he would eat such as: hot dogs, sausage, green beans, baked beans, black beans, baked fish, avocado, mashed (with a fork) regular and sweet potato, and steamed carrots. Today he will not touch any of those foods.

He is in feeding therapy. He started in April and had it weekly until June. Then he moved to every two weeks, then as needed (about once a month). I noticed that he was slowly dropping foods. It started around the time he started daycare and began that dreaded cold/virus thing that took up residence. His OT attributed it to him being sick and said to just continue to offer foods and use his NUK brush. He started resisting the NUK brush and dropping foods. In late September/early October the OT began seeing him weekly again. She said that he was retracting his tongue again and his oral skills had declined. BTW, did you know that the ability to eat has nothing to do with the number of teeth you have? Randy has almost a full set and does not eat well.

But I digress again.... He has missed three weeks of feeding therapy since his surgery. He goes back to daycare this week and will resume his therapies (he has gained some other skill since being out of therapy but I will save that for another post). I am going to beg her to give me some more techniques. What I am doing is obviously not working. And the worst part is that he seems so depressed when I am feeding him (unless it's yogurt). He puts his thumb in his mouth (he does not suck his thumb), he leans his head to the side, his eyes gets glassy, and he cries. I am usually the only one who gets this behavior because if he is at the sitters or my mom's or with a friend, I try to give them food he loves. I feel like they should not have to deal with that and I don't want to make him more difficult to babysit than he already is. My hubby and daughter usually pick something easy too when they feed him. I am usually the one trying to get him to eat mashed table foods or a thicker puree.

I am at a loss. I need suggestions beyond "he'll eat when he gets hungry". Any ideas?

My Son is Back!!!

And he has been back for about a week. For three weeks prior to his surgery and two weeks post surgery, Randy was waking 1-3 times throughout the night. And he woke up screaming. A loud wail that sounded as if someone was chasing him. Some nights it would take a bottle to get him back to sleep. Some nights it took Tylenol. Some nights it took rocking.

I was beyond miserable. I was snappy and work and at home. We were not even enjoying our evenings because I was exhausted (while he recuperated at the sitters). I'm not sure what the trick was. I asked the sitter not to let him nap before 11 am. I also began giving him a bowl of cereal before bed. I'm just glad to have my son back.

Free to go!!!!

Well almost. We have the word, just waiting on paperwork.

It Never Gets Easy

Randy's shunt revision went well. His follow up CT scan looked good and they are just observing him and giving antibiotics to prevent infection. If all goes well, we'll be heading home tomorrow or Saturday.

Despite having gone through this with him almost a dozen times, it never gets easy. I know what to expect, but it does not get easier. In fact, the two revisions this year have been more difficult than the 8-10 last year. I think that we had time for the dust to settle and got a taste of "normalcy" where as last year the surgeries were back to back to back; there was never anytime to let your guard down so I got used to operating in the "crisis mode".

It never gets easier to hold him down while they stick him over and over to try and draw blood. I took Randy to one of the satellite locations to get him blood drawn Tuesday evening. This location is about 30 minutes away, whereas the main location is more like 50 minutes away. We went at about 7:00p after work, therapy, and dinner. They were sooo kind and it was virtually empty. I warned the phlebotomist that he was a hard stick. She took her time to find a vein, and then got a colleague to help. She got blood on the first stick!!!! Then the vein blew. The amount of blood she drew was not enough to run any test. The guy helping her went to the other arm. He looked for a while and tried a vein; no blood! She then went to the ER department to get a nurse so that they could give his feet a try (the phlebotomist are not allowed to stick in the feet). Two nurses came. They searched and searched and gave it a try; no blood. Meanwhile, Randy is screaming and crying and babbling and looking at me with pleading eyes. They sent us away with a note telling the main hospital that they could not get the blood and to draw it in the operating room. Does it ever get easy?

We arrived at the main hospital at 9:00a for surgery that was "tentatively" scheduled for 11:00a. Randy was basically considered an "add-on" because the OR schedules fills up rather quickly. They do save a few spots for emergencies though. He was not allowed to have anything to eat or drink after 3:00a. So mommy set her alarm for 2:30a to feed him. I gave him bowl of oatmeal, which he devoured, and a bottle, which he refused. He then proceeded to talk and play in his parents bed until 5:00a. Lucky for us, he played by himself. We dozed and at 6:00a it was time to get up. I had to give him a full bath in baby shampoo and put him in clean garments. He was sleepy; I was sleepy. Does it ever get easy?

So we are waiting patiently in the pre-op area. He wants to play on the floor; that grosses me out. The nurses ask a million questions that I have already answered a million times. They were nice though. They got toys for Randy and a blanket for the floor so he could play. He was really good as 11:00a came and went, 12:00 came and went, and 1:00p came and went. At 1:00p he finally passed out only to be awakened at 1:15p to go to surgery. He was a big brave boy as we kissed him goodbye to be taken to the operating room. Does it ever get easy?

Pre-op with Grammy

And then you wait. You eat because you are not sure when you will have the chance to do so again. You use the restroom. You update family and friends. But mostly you wait. You wait in this room with TV's that no one is really watching; with magazines that no one is really reading. Does it ever get easy?

You talk to the doctor and he tells you all went well. He tells you that he will monitor your baby and you thank him. You wait to go to recovery to find a groggy, whiny baby. He is loopy from the anesthesia, but is also cranky from it. Sometimes he is nauseous or crying. You hold and soothe and try to get him to drink so that you can move to your room. Does it ever get easy?

Post-op; recovery

Remember those questions you answered in pre-op; well you answer them again when you get to the room. There a luxurious looking pull out chair for you with sheets. The PCA's and nurses check out your child and ask you if you need anything (how about waking me up because I hope I'm dreaming). Then they leave and say "get some rest". And every hour someone is leaving and repeating "get some rest". Does it ever get easy?

I know for me it has not gotten easy. But I do thank all the doctors, nurses, child life specialists, PCA's, interns, phlebotomist, x-ray technicians, transport persons, cafeteria workers, and other parents who certainly make it bearable.

Day after surgery. "Look at my bald head!"

Surgery is scheduled

Shunt revision is Wednesday. The nurse from neurosurgery called this morning and said the doctor wanted to do surgery. She asked if he had a fever, cough, runny nose, etc... I told her he had a slight cough and some congestion. She told me he needed to get in and see his pediatrician to be cleared for anesthesia; TODAY. He also needs to get lab work done. When I took him two and half weeks ago, the neurosurgeon talked about admitting him a day early and giving IV antibiotics an infection precaution. The nurse is going to call me back with more details and a surgery time.

So......
Today: Doctor at 3p
Tomorrow: Lab work
Wednesday: Surgery

He watched the area for so long, now everything is moving so fast....

Happy Halloween

Baby Headache?

We have been dealing with Randy waking (screaming and crying) in the middle of the night for two weeks. At first I thought he might be getting an ear infection; ears fine. Then I thought it might be reflux; started giving med at night. Then I thought that maybe he was just being a rotten piece of cheese. But last night I gave him Tylenol and he slept through the night without a peep. This was the second time in two weeks and the other time I gave him Tylenol too.

Now I doubt that 1ml of Tylenol is acting as a narcotic; especially to a baby that has been on Fentnyl, morphine, and Valium in his short life. I think my baby may be having headaches and that dose of Tylenol of enough to take the edge off while he sleeps. I have to call neurosurgery anyway for his CT scan results. I'll be sure to mention this to them.

Vision Update

Randy had an appointment with the opthamologist last Monday to check his vision. He had a full appointment with pupil dilation and all. The orthoptist comes in first and asks about how he is doing and check his tracking, reaction to light, etc... When she was done with his exam, she asked me if I felt there was improvement? I replied, "Yes.. he seems to be using his right eye and the patching does not seem to bother him as much."

Then they dilate his pupils and we wait. They add more drops and we wait some more (the darker your eyes, the longer is takes your pupils to dilate). The doc examines his eye. He says the optic nerve is the same, no better or worse (his optic nerve was damaged due to his brain bleeds shortly after birth). He remains slightly nearsighted, but no more than any child his age. And.......... he is using both his eyes!!!!

Mommy was right!

Now he is not using them at the same time, but he is using both of them. Prior to this he was only using the left eye. He was literally "turning off" the right eye. This is what happens when a child has strabismus (misalignment of the eyes). The child develops amblyobia (lazy eye) and begins to use only one eye for vision. The goal is to use both of them at the same time. We talked about what this means for his future eye sight. The doc fully expects that he will function as a seeing adult. He won't be a surgeon or a baseball player, but he will have enough vision to drive and do other daily functions.

That pleases me greatly. I have this strong desire for my son to be self sufficient. I have no idea how his brain injury will impact his future, but my fear has been that I will leave this earth and he will not be able to take care of himself. But I need to quit "borrowing trouble" as the old folks used to say and just take it one day at a time and remain faithful that God will make a way.

We've Been Played!

By the adorable little boy you see belowFor the last seven out of eight nights, he has managed to be held, rocked, and/or fed in the middle of the night by one of his parents. He has also managed to spend the rest of the night (er..morning) in his parents bed.

It started last Friday night when he awoke screaming as if he were being attacked. I startled out of bed and stumbled in his room. I thought I was going to find blood or vomit. Nope. Just a little boy screaming his head off. I picked him up and calmed him down. Tried to lay him down....screams again.

I said to myself, "Maybe he is hungry". He was fed dinner by his sister and others do not always have the patience to feed him enough food. Feeding him can be a long process because he eats slowly. Anyway, I go get him a bottle and we snuggle in mommy's recliner. He gets nice and full and goes to bed.

The next night I make sure he gets a good dinner. Surely he won't wake up tonight. Again I am startled awake by screams. I go get a bottle. He drinks it and goes to sleep. I remember back to one of the baby books I read and it talks about an increase in appetite when babies are going through growth spurts. They may wake at odd times through the night wanting to eat. Ahh, that explains it!!

So I am prepared the next night. I have a "middle of the night" bottle prepared and I don't even startle when he screams. I go get the bottle first, then I get him. I cuddle in the recliner with him and he pushes the bottle away saying, "all done". Okaaay. We cuddle and I nod. I try to lay him down and he screams. I am beat. Dad has gone to the couch because he has to get up at 4am. I have the next day off. Baby wins; I put him in my bed.

The next week is the same every night except one. He screams. We go get him. A few of the nights it is at 4am and dad holds him while getting ready for work and brings him to our bed with me when it is time for him to leave. I have tried all I know to do. I have started giving him cereal before bed. I switched his reflux med to nighttime instead of morning. Nothing works. The only night he slept all night this past week is when I gave him Tylenol. Who gives their child Tylenol every night before bed? Don't answer that question.

I have to admit that I have been played by a 19 month old!

Neurosurgery Update

The visit to the neurosurgeon was rather..... well, scary. It wasn't what he said rather than the apprehension in his voice and body language. The neurosurgeon we see is at the Children's Hospital in the next city which is about 50 miles from us. When Randy was in the NICU, he saw the neurosurgeon at the Children's Hospital here. The neuro here went out of the country for two weeks, and Randy had a malfunction. He was sent by ambulance to this other city for a shunt revision. The plan was for him to do his post op follow with this doctor, then be released back to the neuro in our city. Well last year, randy had 10+ revisions. He was getting a revision every 2-3 weeks; sometimes two revisions within the same hospital stay.

The neuro did not was to release him until he was stable. It was October by the time this happened. At this point Randy had more care under the neuro in the next city, than by the neuro in our city so we kept the care there.

Well this neuro is really good. He is young, but not scary new. He is confident, but not cocky. He is aggressive, but not reckless. And he really knows my son well. He stops to talk to him if we see him walking through the hospital for another appointment. But at yesterday's visit he seemed.........scared.

He needs to do a shunt revision. He says that the ventricle is just too large to do nothing. He is amazed that Randy is not feeling sick (this was the way he was for the June revision). But if you remember, Randy has a catheter in his right ventricle that is trapped by blood vessels. If Randy were to get a shunt infection post surgery, all of the shunt with the catheters would need to removed in order to effectively treat the infection. He said that there is a great chance of bleeding and stroke with trying to remove this trapped catheter.

So he is sending him back to the ENT to have him check his ears VERY carefully. He then wants to get another scan in two weeks (I think he is praying for a miracle where he does not have to operate). If the ventricle grows or remains the same, he will operate. If it is smaller, he will just watch it.

Pray with me for a miracle.

I'm almost afraid to type this.....

Randy is not sick!!! No runny nose. No draining ears. No sneezing. No fever. Only a cough late at night. I'm still holding my breath though because he is currently on antibiotics.

He went to the neurosurgeons on October 1st. The neurosurgeon looked at his current medications and said, "Does he have ANOTHER ear infection?" He asked this because Randy has been on antibiotics the last three visits. He was very upset about this. He wants to revise his shunt because the right ventricle that he is watching, continues to increase. But, he does not want to operate with him having an infection unless it is an emergency.

So he sent him to the infectious disease doctor on the following Monday. Although we spent almost two hours there, I must say that this was one of the best doctors I have ever taken him too. She explained about infections and how they respond to antibiotics and morph into different forms to trick the antibiotic (she sounded cooler and more knowledgeable when she said it). She decided to increase his dose of current antibiotic (Augmentin) to the max dose and extend it another four days. If his ear infection comes back when this cycle is over, she recommends three shots of Rocephin. The neurosurgeon should operate the day after the last shot. If his ear infection does not come back after the antibiotics, then the neurosurgeon is cleared to operate.

Randy gets another CT scan tomorrow and he is supposed to see the neurosurgeon on Thursday. Getting a return appointment to the neurosurgeon has turned into a part time job. When I left he office, I was told that the nurse would have to call me because there were no open appointments and only she could override his schedule to fit Randy in. I waited until Tuesday; no call from nurse. So I call on Tuesday and am told that the nurse is meeting with the doctor that afternoon and will call me with a time after the meeting. Still no call. I call on Friday and the nurse is not in; left a message.

So I can envision what is going to happen. Randy will get the CT scan on Monday evening. The doctor will read it Tuesday evening and on Wednesday some nurse will call me and say that I MUST get him in right away. She will give me some god awful time slot with no regard to my job. Word to doctors and nurses: NOT ALL CHILDREN HAVE A STAY AT HOME MOM!!

18 month checkup

So much has happened this week and I did not have any Internet since Monday night. I think the wind damaged some lines. The cable guy spent three hours at our house Saturday, so we are now connected!


Before I post about this subject, I want to say that I love his pediatrician!


Randy had his 18 month check up on Tuesday. I had a long list of things I wanted to discuss. Some of the topics were: growth, bottle, therapies, infections, allergies, and about a half dozen more. The visit started off a little frantic. It was packed in the lobby with all these kids and adults wearing masks. The medical assistant was actually one of the office managers. She smelled like cigarette smoke and did not know what she is doing. The old medical assistant was dry as week old toast, but she was competent.


Anyhoo, the pediatrician looked in his ears and said, "He has an ear infection." If you remember, I had just taken him on Friday and his ears were fine. He had an infection in both ears. He was given another antibiotic (a different kind) and was told to stop using the drops. Randy has an appointment in late November with the ENT doctor, but his ped wants me to schedule it sooner. I think he is finally as sick of these infections as I am.


He then read my list and began talking about all the things on my list as he examined his the rest of him.


Did I say that I love his pediatrician?!


He thinks that aqua therapy is a great idea once the ear infections are under control. We will look into hippo therapy at his two year appointment. He wants him to be re-evaluated for speech (the therapist suggested this in March after his last evaluation). He suggested that I apply for a handicap sticker. Although he anticipates Randy walking, how soon is still to be seen. He is still in favor of daycare despite Randy being sick.


We talked about allergies contributing to the cold symptoms and thus ear infections. He said it is possible, but not completely sure. He said that we will be able to tell a little if he gets better after ragweed season. I told him that we had an appointment for Monday. He was OK with us pursuing this avenue.


I love his pediatrician!


He was all for Randy continuing with his bottle. He says that he needs the calories and he would never drink the same amount from a cup (not that he drinks a lot right now). Randy did not gain much over the last three months, and nothing over that last two months. His stats were:

Weight: 20 lbs 4 oz

Length: almost 31 inches

Head circumference: 44.2 centimeters

He is on the curve for height, but at the lower end. He is not on the chart for weight on head circumference.


Finally, he diagnosed Randy with cerebral palsy. "Cerebral palsy is a group of disorders involving movement, learning, hearing, seeing, and thinking that occur due to problems with brain development and/or injury." Cerebral palsy does not get better or worse. Randy suffered injury with his brain bleeds that occurred due to his early birth. I have only told a few people and the first thing they have done is get really silent and if we were not on the phone they would have had their mouths hanging open. LOL.


I really took the diagnosis well. My ped had talked to me at the 15 month appointment. He was preparing me. I think he would have put off the diagnosis until the 2 year appointment, but I kind of pushed the envelope with my questions. I asked what symptoms Randy was showing that would lead to the diagnosis, etc... I finally asked, "Are you on the fence as to whether Randy has cerebral palsy?" He said, "No." Then I said, "Diagnosis it now then."


Many may be wondering why I would want this diagnosis for my son? I don't want my son to have cerebral palsy. I did not want him born three months early? I don't want him to have hydrocephalus. I don't want him to have a shunt. But my wanting or not wanting does not change reality. It is what it is.


Some of you may wonder how my doctor could delay such a diagnosis? It's because we are not doing anything different now that he has cerebral palsy than we would have done without the diagnosis. He will still get PT, OT, feeding, and speech. I will still work with him at home. Nothing changes.


Then what is the purpose of the diagnosis? I'm not totally sure. I do know that it lets the insurance company know that these issues are not going away. Maybe it gives us a leg to stand on when we are asking for money for therapies and/or equipment.


All I know is that my little boy was the same when we left as when he arrived. That is what is important to me.

Covering all bases

I am still trying to get to the bottom of my son's illness. It could be several viruses/infections occurring back to back. It could be one nasty infection that won't go away. It could be allergies.

I was talking to a coworker. I was telling him that my son has been sick everyday since August 6th; some days a little sick and some days very sick. He commented that he had been sick for almost a month. He says he''ll feel better for a couple of days and then it hits again. He said it is due to ragweed.

So I went to the Internet and looked up symptoms of ragweed allergy. Ragweed pollens cause miserable symptoms, such as sneezing, wheezing, sore throats and headaches. Additionally, hay fever from ragweed and other pollens can develop into complications such as sinusitis, ear infections, sore throats, cough and headache. Advanced symptoms can include fatigue, poor sleep and irritability.

I already have a call in to his allergist.

Looking better

Temp down too 100. Acting better. Ate a jar of baby food. Still not himself, but.... Whew!

The illness continues

Randy was sent home from daycare on Tuesday and Friday this past week. On Friday I took him to the pediatrician after I picked him up. He immediately thought shunt. He checked his ears, chest, nose, and throat. His ears were fine. His chest sounded good. His throat was red! He took a swab and the quick strep test was negative. So once again they say it's viral.

The fever has continued all weekend. It fluctuates between 100-102. Today he is out of it. He started the day OK, but he seems to get worse as the day goes on. He won't eat or drink; all he wants to do is lay around. He is whiny and wants me to hold him. I'm worried. Please pray for my baby.

An opportunity to share

Today I facilitated a group with our teens that are in the GRADS (Graduation Reality And Dual Role Skills) program. This program is for pregnant and parenting teens. The topic of my session was.....prematurity (of course).

I talked to them about some of the risk factors for pre-term labor; and then I shared my story. I shared pictures with them. Some of them turned their heads and could not look at some of Randy's early pictures. The lone young man in the room was visibly upset. They asked so many good questions. Many of them wanted to know how my son was doing now.

It felt really good to do this today. I had a few main points that i wanted to get across:

• eliminate whatever lifestyle factors that are in your control
• learn to advocate for good prenatal care for yourself and pediatric care for your children
• write down questions and answers when you go to the doctors office
• seek advice from a trusted mentor/family member when needed

I truly pray that I helped someone today.

Searching for Solutions

I have been feverishly searching the Internet for ways to prevent my son from having these reoccurring colds and ear infections. There is some pretty scary complications from chronic ear infections. I kept finding the same ways to prevent ear infections: switch to a daycare setting with six or less kids (there are five); keep away from smoke (none of us smoke), sleep with a humidifier (done), and limit bottles and pacifiers (only a couple times a day).



Then I came upon a tip that I had not seen before; eliminate dairy. If you have read previous posts (6/18/09 & 7/14/09) you know that Randy is allergic to eggs and has trouble with milk. One of the things that has happened as he has started daycare is that I am not in as much control of his diet. When he goes to his sitter, I provide all the food. When he is at daycare, they feed him from their menu. They try to avoid milk and egg, but I am not fanatical about avoiding it since he does not have an anaphylaxis reaction.

Well according to several sources, milk allergies often cause congestion which can lead to ear infections. I know this may sound like a long shot to some, but I am willing to try anything. So I am off for more research so that I can overhaul his diet.

Guess what?

Randy's ears are draining again! Ugh!!!!

Update

I know that my latest posts have all been about this "cootie" that is attacking my son, so I thought I should update on how he is doing overall.

Randy really likes daycare. He is always happy to see Miss Kim when I drop him off in the mornings. He has four other babies in his class; he and another boy are 17 months; there is a 7 month old, a 10 month old, and a 2 year old. Randy and Michael will be moving to the toddler room soon. At daycare, they listen to nursery rhymes, go on stroller rides, and go to the gym to play. None of the babies are walking, but a couple of them are pulling up.

Playing with toys at daycare

Since being in daycare Randy has become really aggressive. He hits if you are taking things from him and he definitely has mastered the word "NO". He tells everyone bye-bye, and will say this to you if he wants you to leave him alone. He can clap his hands now and will start clapping them if he does something good. He also starts clapping them if you start singing.. "If you happy and you know it...." He is still army crawling and scooting on his bum to get around. He is finally tolerating a little weight bearing on his legs; but only for a few seconds.

He has been following up with the neurosurgeon's office since his shunt revision in June. There is an area that they are watching closely, the right temporal horn. It has been increasing since his revision. His last CT scan was Monday, and he has to get another one on October 1st. Let's pray that this area decreases slightly or stays stable. If not, Randy may be looking at a shunt revision.

His feeding has been slipping. For a while he was eating almost everything. Now he only wants a few meats: chicken nuggets, hot dogs, chicken breast, and MAYBE crumbled ground beef; no vegetables; no fruit; crackers; and dry cereal. He will still eat as much baby oatmeal and baby food that you can give him. I am not sure if this is because he has been battling the "cootie" or if he is being a picky toddler. I hope it is not a sensory thing. I want his eating to progress, not regress.

I am really tempted to give up the bottle. He is not interested in it very much. I just do not know how to get the volume of milk into him if I let go of the bottle. He only drinks about an ounce from the cup at a time. Who has the time to offer the cup every 30 minutes?

Lastly, he has a runny nose, cough, and fever again. He is finishing his antibiotic from the strep in his ear. The nurse says that this is probably viral instead of bacterial since he is currently on an antibiotic. Don't doctors always say it is viral?!

I have a runny nose, but can still clap my hands

I am hoping that his immune system strengthens for this upcoming winter. I hear that it is going to be bad with the flu.

Streptococcus pneumoniae

What?! That's what I said. This is what Randy was diagnosed with on Tuesday. This is what has kept him sick with cold/flu/ear infection symptoms for almost a month. This is what was festering in all that ear drainage.

According to the CDC, Streptococcus pneumoniae (S. pneumoniae or "pneumococcus") is a bacterium commonly found in the nasopharynx (back of the nose) of healthy people. The presence of pneumococcus in the nasopharynx is referred to as "carriage". Most people have been carriers of S. pneumoniae at some point in their lives. Pneumococcal carriage is more common in young children, is usually transient and generally causes no illness. S. pneumoniae is an exclusively human pathogen and is spread from person-to-person by respiratory droplets, meaning that transmission generally occurs during coughing or sneezing to others within 6 feet of the carrier. Thus, carriers of S. pneumoniae, while generally healthy, are an important source of infection and disease for others.

Occasionally (Randy fits in the category), S. pneumoniae will spread from the nasopharynx of a colonized person into other parts of the body and cause diseases, including otitis media (ear infections), sinusitis (sinus infections) and pneumonia (lung infections). In addition, S. pneumoniae can sometimes get into places in the body that are normally sterile (free of bacteria) including the blood, causing bacteremia, or the lining of the brain and spinal cord, causing meningitis. When pneumococci get into these sterile places in the body, it is called "invasive" pneumococcal disease. A relatively small number of serotypes of S. pneumoniae account for most invasive disease. Invasive pneumococcal infections can result in serious complications or death.

So Randy is now on another antibiotic and is still using the antibiotic ear drops twice a day. He follows up with the ENT on Monday. He also gets a CT scan on Monday. I called the neurosurgeon's office and asked if this bacteria could penetrate the brain barrier resulting in a shunt infection. The nurse practitioner said it is possible, but unlikely. She said if his shunt were to get infected by this bacteria, the symptoms would be the same as any other shunt malfunction which is vomiting, irritability, lethargy, and possibly pain. I do feel better that he already has a CT scheduled just in case.

"Unofficial" End of Summer

Here is a recap of Randy's summer:

This is hard work!

Look at me swim~ trying on shades

I'm smiling even though I'm about to have surgery.

Didn't you know I could drive?

Any fluid from the ears indicates infection

Did you know that? I didn't. This is what the nurse from the ear, nose, and throat doctor told me today. It does not matter if it is clear, yellow, brown, or blood tinged.

You know that Randy has been battling this "cootie" for the last 3 1/2 weeks. Well his ears have been draining since about day 8 of the "cootie attack". I thought it was normal for a cold like when your nose runs or your eyes get that gook. I took him to the doctor after a week of the drainage and was given antibiotics. I then took him back three days later when he was not getting better and they gave him a stronger antibiotic. Well his finished the antibiotic on Friday and his ears are still draining. The pediatrician told me to call the ENT.

The ENT nurse told me to bring him in on Thursday morning and begin giving him the ear drops again. She said they will probably suction his ear and take a culture. Then I could have sworn I heard her say something like "...they may want to observe him...." I am pretending I did not hear that.

I can still clap even though I don't feel good.

Sleeping while being held makes me feel better!

Unwanted house guest

We have an unwanted house guest and it won't leave. I call it the "cooties", but it goes by other names. Some of them include: fever, cold, virus, pneumonia, ear infection. I don't care what it is, I just want it to leave my baby alone.

As I stated in the previous post, Randy started daycare. His first day was Tuesday, August 4th. He began to get sick Thursday, August 6th and has been sick ever since. His only full week of daycare was the first week. He is only supposed to attend on Tuesday, Thursday, and Friday. The "cootie" reign goes like this:

Thursday, August 6th-Low grade temp
Friday, August 7th-Runny nose and sneezing
Weekend-fevers ranging 99.9 F-102.9 F

Monday, August 1oth-temp 103.5 F, sneezing, runny nose, cough
Tuesday, August 11th-visit doc, chest xray (normal), blood (normal); called it a virus
Wednesday, August 12th-fever breaks, cough, runny nose, and sneezing persist

Tuesday, August 18th-ears start to drain; cough, runny nose, and sneezing persist
Saturday, August 22nd-back to doctor; double ear infection, antibiotic and ear drops

Monday, August 24th-cough persists; starting to sound like a bark; go to urgent care; suspect pneumonia and pertussis (whooping cough); new antibiotic and nose spray
Tuesday, August 25th-No whooping cough; symptoms continue but not as severe

Have you noticed that we are in week three of the "cootie reign". I need some volunteers for my army so I can kick this thing out of my house!!!

Whew!

It has been over three weeks since I posted. I guess that what happens when you go back to work. I started work about 2 1/2 weeks ago. It was kind of hard since I had been off for six weeks. I enjoyed going to therapy in the morning and piddling around with Randy. We both loved our mid morning naps and staying up late. But all that has come to an end.

Randy also started daycare. It has been hard. I have been debating whether or not to send him. The daycare specializes in children with special needs: developmental and medical. The staff:child ratio is low and there is a full time nurse on staff. He goes three days a week: Tuesday, Thursday, and Friday. He goes to his home sitter the other two days. He has started in the infant room, but will transition to the toddler room next month. There are five children in the infant room and one or two teachers.

He handled the change great. He did not cry when I left (but I did). He was happy to see me when I came to pick him up, but was ok when I dropped him off on Thursday. But one of my fears became reality on day 3; he got sick! He woke up with a runny nose. By noon, the nurse called me and said he had a low grade temp. She gave him Tylenol. This was Friday.

He began to sneeze that night and his temp crept up another degree. By Saturday morning he was coughing, sneezing, rubbing his eyes, and his temp was up to 102. He was miserable all day, and I could not get the fever all the way down.

On Sunday the fever seemed to break, but the other symptoms stayed. Monday morning he went to his sitter. After his nap, his temp soared again; this time to 103.5. It stayed elevated the rest of the day despite Tylenol.

I took him to the doctor Tuesday morning. The pediatrician hoped it was just a virus, but was a little worried about the cough and the fever. He swabbed his throat and sent him to Children's Hospital for a chest x-ray and bloodwork. The strep screen was negative as was the chest x-ray. The preliminary bloodwork was normal and the culture will be back in a week.

By Wednesday he began to feel better; and today he went back to daycare. I hope this illness is not a preview of what our winter will be. Also my second fear became a reality too. He lost weight.

Look what I found this morning

when I went into Randy's room.
I'm not talking about him covering his face (he was actually crying because I took too long to get to him); I am talking about the fact that he is sitting up! He went from laying to sitting all by himself.

I have not witnessed him doing this by himself yet, but we have been working on it so hard in therapy and practicing at home. Maybe the Kinesio (sp?) tape helped.

His PT taped his tummy. She said this would keep the muscle in place and help build strength. He really did not mind it much; I just had to keep a onsie on him so he wouldn't take it off. I'll have to let her know what he did on Monday and maybe she will tape him again.

I'm done with the dairy products....

I don't care what the allergy testing says. I have tried on three occasions to give Randy dairy; once before the testing and twice after the testing. Each time I give dairy to him he vomits for the rest of the day and gets fine bumps on his cheek.

Now I need to decide should I try soy products? rice products? goat products?

Eye/Vision Update

Randy had a follow up appointment with the ophthalmologist today. As usual, the orthoptist performed and eye exam. She shined lights in his eyes and watched his tracking. She asked me about his behavior while he was patched. I told her that his movements were more "infantile" while he was patched.

I brought DVD's of some of his MRI's and the ophthalmologist reviewed them. He wanted to see if he could get a good look at the optic nerve. Damage to this nerve can be an indication of his vision loss. When he entered I asked him what he saw. He said "Oh I could see the optic nerve some". I then asked if there was severe damage to it. He replied, "not severe". I finally had to ask him was he keeping something from me. I told him I can handle whatever it is. He assured me that he was telling me all he knew. He also said that the damage is not a direct indication as to the level of vision Randy will have. He said we will just have to keep treating him and we will have a better indication when he is older. I dropped the subject, but I still feel like he had speculations that he was not sharing with me.

As you can see from the pictures, his right eye wanders. This is a result if his strabismus. The bad part is that when it wanders, he is essentially "turning it off". If he turns it off long enough, he will essentially lose vision in this eye.

The patching forces him to use this wandering eye, thus preserving the vision in this eye. So he upped the patching time from 2 hours to 4 hours. I have to bring him back in 3 months for a full eye exam with dilation and everything. This is a 2-3 hour visit.

I did ask him about the future treatment plans for Randy's vision. He said we are patching now to save and maximize his vision. When he is older, we will pursue eye muscle surgery to straighten the eyes. He said this surgery is not as effective at such a young age. And since Randy has other neurological issues, his success rate with the surgery drops from 80% to 50%.

So right now I will continue patching.

Tests and tubes

Randy has completed all his follow up tests from his last visit at the feeding team. They were pretty pleased with his weight gain and his eating, but not happy with his milk intake. The GI wanted to rule out any medical reasons for why he was not tolerating his bottle. He ordered a video swallow study and and EGD.

The video swallow basically took a picture as he ate puffs, purees, and drank some milk. They added some barium to these items so that it would show up on the x-ray. He did a good job, except with the bottles. He gobbled the items (he was starving because he had not eaten in 5 hours) and they went down well. He refused his bottle, so we had to use an open cup. The test showed that he had delayed swallowing with the thin liquids. He definitely refluxed, but did not aspirate. Aspirate is when you reflux and it goes into your lungs. The speech therapist said he protected his airway at all times.

The EGD took a picture of his throat, esophagus, stomach, and small intestine. He had to undergo anesthesia for this test. They took a camera hooked to a scope and put it down his throat while they took pictures. They also took some specimens of each of these areas and will send them to the lab. He wants to make sure all is well since he is well over a year and still suffering from reflux. The camera showed that all the areas looked good; that is a good indication that the Prevacid is doing a good job of protecting his body from the acid.

He also received ear tubes while he was under the anesthesia. The procedure was sooooo quick. Both procedures were done in less than 30 minutes. I am glad I went through with the tubes. The first ENT wanted to "wait and see". I did not feel comfortable with this because he had already failed three hearing screenings and I felt it was impacting his bottle feeding. The first ENT felt that it was totally unrelated to his bottle.

The ENT from the feeding team felt that the fluid in his ears could be impacting his bottle feeding and was not ok with his hearing being affected during this time of crucial speech development. He said that there was lots of fluid behind the ear and he drained them well before inserting the tubes. He was kind enough to let us get our ear check with our pediatrician in three weeks since we already have an appointment. This saves us an hour drive. If there is a problem, we are to call him though.

He is recovering wonderfully. He has eaten twice and taken a small milk and juice bottle. BTW, the children's hospital where we go lets you buy a bottle of Tylenol for $1 if your child was seen there or being discharged. You can get up to two bottles. Isn't that cool?!

Pity party

I cannot seem to get it together. That shunt malfunction last month just blew my mind. This latest shunt revision was exactly one year from his first shunt revision. I am so fearful that summer and fall of 2009 will be a repeat if 2008. I don't know if I can take another fall like last year. Randy was hospitalized 7 times and was operated on 10+ times. He had been doing so good; he had not had a revision since September 22, 2008. I did not even see the signs; I had no idea his shunt was failing..... I feel like the other shoe just dropped.

I keep questioning "why my baby". Not necessarily the prematurity; I know quite a few people with preemies, even micropreemies. But why did my baby have to suffer brain damage? My two close friends and my cousin had preemies over 18 years ago, 28 week twins and a 29 weeker, and their children came through with flying colors. My cousin had a 29 weeker; nothing more than mild ADD. My friends daughter just recently had a 24 weeker; no brain bleeds for him either. I know that I should not question, but lately I can't seem to let it go.

I am just getting weary from worry. I don't know why I am worrying about things I cannot change, but I am. I am just flesh and you know it gets weak. And now I feel like I can't let my guard down. As soon as I do, something else will happen.

I'm tired of well meaning questions and comments from others. "Girl put him down and let him walk" (he can't). "I know he's all over the place" (umm...actually he's not). "Can he crawl" (no). "He'll probably just skip crawling" (really?). "What's wrong with his eyes" (none of your business). "Awwwww" (he does not need pity).

I know I sound like a total witch today. Forgive me and pray for me.

Enjoy a cute face after my grumpy post. Riding the boat at the zoo.

Crawling and Bawling

That's what happened today at therapy. Randy crawled and I bawled!

Maybe I am exaggerating a bit. He did not crawl in the way you are thinking. He was not up on all four and move alternating arms and legs. Actually he was laying on his belly and his dug his toes into the mat and pulled himself by both elbows at the same time as he pushed off on his toes.

But for me, he crawled. And I bawled!

Ok, maybe I did not bawl. But there were tears in my eyes and they were pushing against my eyelids. And every so often one would fall. The OT said, "Mom you are going to make me cry too."

Randy crawled and I bawled!

These were certainly tears of joy. He has overcome so much. He is so determined. He has worked so hard to do things like eat and play and sit up and grab toys and roll over and see and hear. Today was a major victory!

Randy crawled and I bawled!

I bawled for the baby that the OB said "I'm not sure if this is really a baby; don't celebrate" because my hormone levels were out of whack.
I bawled for the baby that I laid in the bed for three weeks and tried to keep him in my womb.
I bawled for the baby that took 20 minutes of tugging and pulling to get out of the womb because he was trapped by those awful fibroids.
I bawled for the baby that was given a 50/50 chance on his first day of life.
I bawled for the baby that suffered grade III IVH (brain bleeds) on his fourth day of life.
I bawled for the baby that contracted MRSA and meningitis.
I bawled for the baby that has had 10+ brain surgeries in the first nine months of his life.
I bawled for the baby that spent more of 2008 in the hospital than out.
I'm bawling now because I am in awe of my little man.

Randy crawled and I bawled.

19!!

That is the number of ounces of formula Randy drank today. Randy has drank less than 13 oz per day since the beginning of May. I was worried. The feeding team was worried. His OT was worried. We tried every cup known to man; different ways to support his chin. Nothing was taking him over that 13 oz mark. And actually he was averaging only 10 oz.

Well since his revision last Friday, each day he has drank more milk. He drank 13 oz on Monday, 14 oz on Tuesday and Wednesday, 15 oz on Thursday and Friday, and today.....!!! Could it have been the shunt? Did he have pressure in his head that made drinking uncomfortable? I do not know. But if it was the shunt, then I know to pay attention to even the smallest changes. His neurosurgeon and I were puzzled why he was not acting sick. Maybe he was; it just was not as drastic as expected.

"The signs and symptoms of shunt malfunction, are the same as for hydrocephalus itself, headache, nausea, vomiting, irritability, change in behavior or intellectual performance, etc. "

I guess I was expecting more drastic symptoms from him. Now I know better.

Randy's Adjusted Birthday

Today would have been Randy's first birthday had he made it to his due date. It is amazing how different I feel this day than I felt on his actual birthday. On his actual birthday I was a ball of emotions ranging from grateful to angry to sad. I was not able to have a party for him because his sensory issues were bad at the time and he would whine and vomit when he was around too much commotion or too many people. And it was still RSV season and I did not want him to get sick. Today he still does not like a lot of commotion; but he is soooo much better. He may whine a little, but he no longer vomits from the over stimulation.

I had seriously considered having him an "adjusted birthday party". But as time got closer, I decided against it. Now I know I have to adjust for medical reasons and to get a better estimate of where he should be developmentally, but I need to being to mourn the notion of when he should have been born and accept that he was born 3 months early. I feel that this is an important step in me stopping all the "what ifs" in my head. So instead of thinking if he had been born this day he would...

• be standing and/or walking
• not have hydrocephalus
• not have a shunt
• not be delayed
• ready to move to cow's milk
• drinking from a sippy cup
• drink more than 12 oz per day
• not have spent months in the hospital
• have good vision
• have good hearing
• not be "special needs"

I am focusing on his strengths. He is:

• charming
• sweet
• able to sit, scoot, and pivot
• can say ma ma, da da, bye bye, hi, and la la
• strong
• determine
• loving

His prematurity affects who he is, but it does NOT define him.

#1 Wins!!!

We are going home. He will get a follow up CT in 1.5 weeks and see the neurosurgeon.

The possibilities

The attending pediatrician stopped by and said there are three possible outcomes once the Neurosurgeon reviews the CT scan:

1. Send Randy home and follow up in two weeks
2. Observe him and order another CT/MRI in a couple of days
3. Take him into surgery today - X

We can mark off #3 because they allowed him to eat!

Maybe?

The CT results are in. The nurses from neurosurgery say that it looks pretty stable; but the final word comes from the doc and he is surgery right now. Randy wants him to make a decision so that he can eat.

A little more detail

Right now Randy is resting comfortably. He was a bit groggy (more than normal) after surgery yesterday, but had perked up by 2 am when it was time for his CT scan. Thankfully his nurse let me off the hook and went down to the scan with him so that I could get some sleep on this wonderful pull out (did something drip on your screen). The neurosurgeon on call this weekend (she knows Randy well too) said that the left ventricle is slightly smaller, but the right is larger. She wants a repeat scan on Monday. So no Sunday discharge like we hoped for.

After surgery yesterday, Randy's neurosurgeon said "I have good news and bad news". Of course my heart stopped beating instantly. I am going to try to explain it the best I can.

Background info: Randy has one shunt with two catheters attached; one that goes into the right ventricle and one that goes into the left ventricle. The left ventricle is the one that is greatly enlarged over his baseline. It is like 5-7 times bigger than his normal. The right ventricle was only slightly larger than it has been in the past. His neuro was amazed that he was not presenting symptoms. He does think that this has been slowly building up and within a few weeks he would have been symptomatic.

Good news: Both catheters were clogged and would not flush at all. He was able to clear the left catheter (the larger side) and get it flowing. I can't remember if he changed the catheter, but I'm pretty sure he did. He also said that the left and right ventricles appear to be communicating (fluid flowing back and forth).

Bad news: The right catheter is tangled in blood vessels. It would be risky to try to remove the catheter. He did reconnect the catheter in the slim chance that it started to work on its own again.

So what does this all mean? Well, if the ventricles continue to communicate then the left catheter will work just fine. If not, then he will have to endure another craniotomy and go in and create a path for them to communicate. I do NOT want him to have another craniotomy. It is a big surgery. He has had one before. It took him a while to heal, and he lost so many skills after the surgery.

Pray for my baby.

Surgery....

Surgery went ok. Randy is now in recovery. He will get a CT scan in 6-12 hours and another one on Sunday morning. If all goes well he will be sent home Sunday.

Randy's in surgery

He just went in at 3:30. I just typed a long and detailed post and this hospital computer deleted it. I don't have the energy to type it again. Maybe later. Pray that all goes well.

Randy at the hospital

Everything is happening really fast. Randy's MRI from yesterday showed that his ventricles are significantly larger than his last exam and larger than they should be. He is all checked in and has had x rays of his shunt. The IV team is on their way to put in a line and draw labs. I refuse to let a floor nurse put a line in him. And they know him well enough that they don't want to. He has a CAT scan scheduled in the morning and a revision in the afternoon depending on the results. Pray for him.

Another Hospitalazation

The nurse from the neurosurgeon's office called about an hour ago and told me to bring him in for admission. His ventricles are significantly enlarged. Indicates a shunt failure. I will update when I get a chance.

Feeding Team

I want ALL of Randy's doctors to buy the same scale and calibrate them the same and measure his length the same!

Whoo; I feel better now. Randy had his follow up with the feeding team today. This was a long appointment where they want to see him eat and he is evaluated by the nutritionist, OT, speech therapist, nurse, and GI doc. His last appointment was in February. He grew more than two inches and gained 31 ounces. His current stats are:

Weight: 18 lbs 10 oz
Length: 29 inches
Head circumference: 43.6 cm

They were not pleased with the amount of formula that he is taking in. He is drinking 8-10 oz per day, and I sneak another 3 oz in with his cereal. They want to change him to a "toddler" formula once his allergy testing is complete. It really is more like a nutritional supplement. The nutritionist wants to try Pediasure (if no milk allergy/sensitivity) or Elecare Vanilla (if there is a problem with milk). Both of these are either 30 cal/oz or can be mixed to that. His current formula is 20 cal/oz.

I also learned that an ENT is part of the feeding team. He was called in because of the fluid on Randy's ear, the failed hearing tests, the lack of interest in bottle, and the summer ear infection. He was not in agreement with the "wait and see" approach. He felt that we had waited long enough and it bothered him that Randy had an ear infection in the summer. He says that is not a good sign about the fluid build up. He wants to proceed with tubes. He does not want to jeopardize his speech development, and he feels that the feeling in his ears could be jeopardizing his fluid intake. He was an amazing ENT. He took a "holistic" approach and talked about how many of these small issues were related and the larger implication, mainly his growth and development.

He consulted with the GI (who usually comes in, but sent the ENT instead) about ruling out any medical reasons for Randy not wanting his bottle. We know that some of it is related to solids, but he wants to make sure that his anatomy is working properly and that we are adequately managing his reflux. Randy will get a video swallow study and an EGD. He will have to be sedated for the EGD, so the tubes will be put in at the same time (that was the selling point for me).

I left the two hour appointment with my head swimming and wondering if the pendulum had swung the other way and we were moving too fast. But my gut is saying to go ahead with the tubes and the EGD. I have researched them and know that even if they were unnecessary, they will not bring him fatal harm and they will fall out in 1-2 years. I cannot risk my son missing any more months of clear hearing. He has enough hurdles to climb without me not removing one that I can. I love him way too much to know do all I can for him.

Took this off a friend's Facebook...

The little cold has....

turned into an ear infection. Randy developed a cough and the slight fever lingered over the weekend. I told myself that I would call the pediatrician if he did not feel better this morning. I always second guess myself when deciding to call the doctor or not. I don't to be a frantic mom that takes him to the doctor for everything; but I also don't want him to suffer unnecessarily. And Randy has a tendency to present such slight symptoms even when he is really sick. My daughter had chronic ear infections as a baby; and I always knew. She got sick very quickly. High fever, vomiting, screaming. You get the picture. Randy just barely runs a fever and does not scream. Usually the main indicator for me is his mood. He is generally so happy, and when he is ill he gets cranky. I knew to call when he cried all the way through physical therapy today.

Speaking of therapy, the OT tried the honey bear cup with him after his PT session. She ordered him one and wanted to try it before we saw the feeding team tomorrow. The honey bear cup allows you to squeeze the liquid through a straw. He did no better with this than any other cup. He would not close his lips around the straw. She said if she has to teach him to drink from a cup, she may as well teach him to drink from an open cup. This is a link to see the cup
http://www.talkingchild.com/shop_HoneyBearCupwithStraw.aspx

Randy goes to see the feeding team tomorrow. I was nervous about the appointment since he has not been drinking very well. But I feel better because he weighed 19 lbs today at the pediatrician!

BTW-We are cameraless (is that a word)? right now, so no new pictures.

A little cold coming on

Randy starting coughing yesterday and this morning his breathing was a little loud because he was congested. It has now turned into a cold with the runny nose and slight fever. I am grateful for the Internet because I still use his thermometer from the NICU (they send you home with all the tools from the bedside). Well they use metric in the NICU. So his thermometer reads the temperature in Celsius. I cannot convert in my head, but I remember that they always said it should be no lower than 36.5 C and no higher than 37.1 C. Randy's temp was 37.6 C (99.7 F). This is nothing a little Tylenol and rest can't take care of.

Randy and Grammy at physical therapy

I had the great pleasure and honor to take Randy to have his p. t. on two Mondays. He is such a good boy but I did see his patience pushed to the limit. He also likes to do things his own way. Randy moves to his left side very well. His therapist is working with him to use his right side also. She tells him unless he starts to use his right side as well he will continue to go in circles. She uses different toys to attract his attention and she lets him move to the left then when she wants him to move to the right she gently assists him. She also helped him stretch his muscles on the right side. She is very good with him. He responds to her very well. That is until she had him on his knees. The first week we went he screamed bloody murder when she had him on his knees. He did not like it at all. This week he seemed not to mind it quite as much. She was pleased with the progress he is making and tells him he is doing a "good job." At the end of his session this week she let him roll over until he was right by me. He lifted his arms and we left.

ENT & Allergist

It feels like I have not posted in ages. I took Randy to the ear, nose, and throat doctor because he had a failed hearing test and his tympanogram (sp?) showed that his ear drum was flat. The audiologist stated that the flat ear drum usually meant there is fluid behind the ear and referred us to the ENT clinic.

We waited a month and saw the ENT. Can you say "Waste of time?" The doctor came in and of course asked me all the same questions that I just told the nurse: "....26 weeks.... 1 lb 10 oz.....latex precautions.... failed two hearing screenings...hydrocephalus...." He then looked in his ears and said that the eardrum looked dull. He wanted him to take a tympanogram. He said if he passed it, then he would take another hearing test.

And then he tried to leave the room. Now anyone who knows me can predict what happened next. I said, "Hold up! I have a few questions." I asked him if Randy's weak suck and lack of interest in his bottle could be related to the fluid on his ears. He said no. I asked him if the fluid in his ears could be allergy related. He said it was possible, but the only way to tell was to remove the allergen and see if the fluid goes away.

The nurse gave him the tympanogram again. This time both ears got a flat reading. She then told me that I should bring him back in 3-4 months. Is your mouth hanging open too? The nurse noticed my puzzled look and asked if I wanted to talk to the doctor again. "No thanks." Can you say waste of time?

The allergy appointment was the total opposite. The nurse asked me a few history questions. The doctor questioned me too, but she did not ask the exact same questions. She probed deeper and even asked different questions. She was calm and did not act like she was in a hurry. She decided to give him a blood test instead of a RAST (skin) test. She did not want to risk a severe reaction. She has a phlebotomist in her office, but felt more comfortable sending him to children's since his veins are almost non existent. She tested for: milk, soy, eggs, latex, dust mites, and a few other things I can't remember. She said to bring him back in 2-3 weeks.

Well, today the nurse called and said that his blood test was negative for milk, but positive for egg whites. The latex test was not done (they probably ran out of blood because they did not fill all the vials. That is a long and horrible story for another day). She is going to do a skin test for the milk when he goes back. The blood test can have false negatives. The skin test can have false positives.

When she first said eggs I thought, "OK. No eggs for you buddy." Then I thought about all the things made with egg: pancakes, cookies, yogurt, ice cream, casseroles, lunch meat, some breads, donuts, muffins, chicken nuggets, etc.....