EEG Results

This morning I e-mailed the genetic counselor that works with Dr.Hamosh (Ryder's geneticist) at Hopkins asking if she could let me know when the results of the EEG were in. I then received an e-mail back from her within a few minutes with the results...

The EEG showed no seizure activity! She did say that it was noted his responses to the stimulus were slower than normal though. She will talk with Dr.Hamosh, but doesn't think these slow responses are too concerning.

The report is being sent to Ryder's doctor at Kennedy Krieger today. I am not sure if I will hear from them or wait until after they complete all of the testing they are scheduling.

Busy Day

This morning Ryder and I got a bag packed, had breakfast, and headed out the door to spend the day in Baltimore at Johns Hopkins for 2 appointments.

Our first appointment was at the specialty clinic to see a pediatric urologist. Some of Ryder's other specialists felt his hypospadias might need to have some more surgery to repair more. The urologist at Hopkins decided that no surgery is needed at this time which I am very thankful about. He said once Ryder is potty training if we notice him unable to pee into the toilet (bad aim) then he would re-think the need for surgery. Even though the urethra is not at the very tip of the penis he feels that it is close enough which should mean Ryder won't have any issues.

Some pictures of Ryder in the waiting area at the clinic....

Once we finished our appointment with the urologist we went to lunch at Bill Batemans. There was not really enough time to drive all the way home so we had lunch and then walked around WalMart for a little bit. Then it was time to head to the second appointment which was for Ryder's EEG test. We got there a little early since I wasn't sure how long it would take to get to the outpatient center which is attached to the actual hospital. We got checked in and taken back to the EEG suite very quickly. The tech was really good with Ryder and took time to "prepare" me for how Ryder might react to the leads being put on and his head bandaged. Much to the techs surprise, Ryder just laid on the bed and didn't make a sound or move at all! I then got on the bed with him and the recording started. At first there was a strobe light in the room that blinked at various speeds for a while. Then the tech came in to turn that off along with the other lights in the room to make it dark. She told me the ideal situation would be if Ryder would take a nap which I knew wouldn't happen. But he did just lay on the bed with me and not try to move or pull at his bandaged head at all. We were done around 4:30pm, but I have to wait for a call with the results.

Here is a picture of Ryder all bandaged up...

When we got home Ryder was pretty tired. He climbed around on the futon for a bit and then laid down on top of it and watched TV which we waited for Rich to bring Zak home. Here are a few pictures...

Once Zak got home we had dinner and then I gave the boys a bath. Ryder had a bunch of sticky stuff left in his hair from the leads for the EEG test so I needed to wash it really good. They played for a while in the tub and then were ready for bed. The boys really like to brush their teeth so that is now part of our bath time routine.

The boys were in bed and asleep by 8:30pm tonight. I then took a shower and am now watching Thursday night TV.

Here is a picture of Robin from tonight...

Plumber...Again

Last night I got into the shower and as soon as I put my head under the water things went very wrong. The faucet in the shower came flying off and hit me in the leg. I called Ben up to the bathroom and he discovered that the pipe actually broke that holds the spout onto the bathtub. Basically, this meant that the shower would not work. And did I mention that Ben was leaving for VA early this morning and won't be back until Friday night. So last night he called the plumber that put in the waterline for our new fridge and scheduled for them to come to the house today.

This morning I took the boys to a playgroup which they both had fun at. Zak behaved very well and listened the whole time until it came time to leave. At that point he started to kick and hit me which was pretty embarrassing so we made a quick exit. The boys were pretty tired from playing so after lunch I was able to get them to actually take a nap.

The plumber showed up around 2:30pm and started working on the faucet. He looked at the faucet and wrote up the estimate for $307. About 20 minutes into the work he called me upstairs to tell me the bad news...he was going to have to remove and replace the hot and cold water pipes in the wall that went to the bathtub! Apparently, the pipes that were there are not made for water that is under pressure like going to a bathtub. The pipes that were there are used for draining condensation from the AC unit. Around 4pm the smoke detector went off (because the plumber was cutting and what not which created a lot of dust) which immediately woke the boys up. I was not very happy because it was obvious they were still tired, but wouldn't go back to sleep. Finally, around 5pm I thought the plumber was done, but when he did one last check he discovered something was not right so had to re-do part of his fix. Then around 5:30pm he was finally done. The final cost for this fix was $657!

Laura drove over after she got off work to pick up Zak since the plumber too so much longer than expected. After Zak left, Ryder & I went to BJ's to buy diapers, wipes, and fruit. I was able to get Ryder in bed and asleep around 8:30pm or so. I am looking forward to getting in our newly fixed shower and go to bed at a decent time.

Tomorrow is going to be a long day for Ryder & I. We need to leave around 9:45am to head to Johns Hopkins Rubenstein Child Health Building in Baltimore for our appointment with the pediatric urologist. This appointment is to determine if Ryder needs to have another surgery for his hypospadias (long story, but some of his doctors feel it was not fixed in the first surgery!). I am hoping they will say he doesn't need surgery, but I would rather find out now rather than later. Then we need to be at the Johns Hopkins Outpatient Center by about 2:45pm for Ryder's EEG test. This building is about 1 mile away from the Rubenstein building according to Mapquest so hopefully I will be able to easily find it without getting lost. His actual test is at 3:30pm, but they need us there early in order to fill out paperwork and get all of the leads connected and everything set up. Then once that is all done they will record his brain activity for 90 minutes. I am figuring we will be out of there between 5-6pm and heading home. I will call Rich when we are done so that he knows when to bring Zak to the house. I am not sure if I will actually get any results tomorrow or have to wait and hear from the geneticist.

Now for a few pictures....

Today VZ was all over the house and very cuddly long with playful. She was into everything and became extremely social. Robin was locked up most of the day because of the plumber so I think that is why VZ was so outgoing today. Here is a picture of her just hanging out with me in the living room...

Here are pictures of the boys wearing their new shoes from Kohls. These shoes were originally $36, but we only paid $5.95 because they were on clearance plus we got an additional 15% off because I used the Kohls charge card!

Haircuts

This morning I woke up with a plan of action for the day. Once breakfast was done I got all three of us dressed and we were out the door around 9am. Our first stop was Party City to buy some baby shower supplies for Tracy. Unfortunately, the store didn't have what I was going for so I had to buy the stuff online once we got home. Our second stop was Target to buy some new bath towels for Ben and I. We have not bought new towels since we have been married so it is time to treat ourselves to new soft towels. Well, as I was walking up and down the aisles of millions of towels I decided Ben would need to come with me to pick out what he wanted. So that is was second failed mission for the day.

On my way back home I decided to stop and get the boys' hair cut because they were in major need of it. Ryder's hair grows so fast and has been a mess for a few weeks. Their last haircut was the day before Thanksgiving so it was time. They both did so good just sitting in the chair alone being big boys having their hair cut. I took them to Hair Cuttery because it is much cheaper than all of the kids' places and it is just around the corner from our house. They both were done at the same time in chairs next to each other. I did need to help Ryder a little because he does have some sensory issues when they use the clippers and need to move his head around. They look like such big boys now!

This afternoon I was able to get the boys to actually take a nap! While they were napping I made dinner and put it in the oven....Chicken with a Spanish Accent (basically chicken, rice, green peppers, tomatoes, and peas...with some olives cut up on top on half since Ben won't eat them). I have not made it in a while so hopefully it will turn out edible! After dinner we plan to go to Kohls to look for the new bath towels. I found out they have a sale going on right now plus the scratch off if you use the Kohls charge card (additional 15%, 20% or 30%). I am also going to look for some overalls for the boys since they have outgrown theirs...and I think overalls are so cute!

Diaper Change

I wanted to make a post showing off Zak's favorite way to help around the house...his step by step guide on "How to Change Ryder's Diaper"

Step1: Walk up the stairs to get a diaper and wipes, bring downstairs

Step 2: Un-snap Ryder's outfit

Step 3: Wipe Ryder's butt (figured this picture was inappropriate)

Step 4: Put new diaper on

Step 5: Secure the diaper tabs

Step 6: Snap Ryder's outfit

Step 7: Give Ryder the dirty diaper to throw away

Ryder is such a good sport through the whole thing! Zak actually enjoys doing this so I decided to take all the help I can get. Zak hates having his diaper changed so we are working on taking him to sit on the potty more and more each day. We have also taken away ALL candy from the boys and are using it ONLY for potty training. They had gotten way too used to having candy at various times throughout the day and we needed something to use as motivation for potty training. Today it worked well because when Zak asked us for candy we told him if he peed or pooped on the potty he could have a piece...he immediately walked upstairs and sat until he peed!

Trip to the Mall

Today we drove to Annapolis and met Colleen, Jamison (aka J), and Josephine (aka Joey) at the mall to let the boys run around and play with them. Lately we have been spending a lot of time inside since it has been so cold so we knew the boys needed a chance to run out some energy. At first we went to the new section and let the boys run around in the corner pretty much out of the way of anybody else.

I was able to get some cute pictures of the kids while we sat and watched them run around and play.

Joey & J

J & Zak
J carrying Ryder

Ryder & J smiling for the camera

Zak, Joey & J

J, Ryder & Joey

Group shot

After that we walked around the mall for a bit and stopped to let the kids play in the play area. It was insanely packed with kids so we didn't stay for too long.

Ryder stayed here where there were less kids

Ryder, J & Zak on the little slide

(little boy in front that tried to play with Ryder)

Once we finished at the play area we headed to eat lunch at Noodles & Company which is at the mall. After we finished eating we walked around the mall a little more. We stopped in Bath & Body Works to see Chelley since she was working (part-time job in addition to her full-time teaching). Then we headed home. The boys fell asleep on the ride home and were full of energy when we arrived at the house.

Ryder's Therapy

Friday morning Ryder's occupational therapist (OT) came to the house during breakfast to do a feeding evaluation. She watched how Ryder used the utensils (fork and spoon), how he chewed various foods (different textures and sizes), and how he drank from a cup without a lid. After watching for a little bit she told me what she was seeing and things we could work on. First, she agreed that the whole task of eating is very daunting to Ryder and that is obvious just from watching how he fights the whole process (doesn't want to get in chair, doesn't pick up utensils, wants to have us feed him). In order to make the process of eating more enjoyable for Ryder she told me that we need to break up the skills used into smaller more manageable ones for him.

First, she taught me the concept of reverse chaining....the child is guided through all of the steps of a behavior except for the last, which he completes on his own. As he becomes successful with the last step, the teacher begins to guide him through all but the last two steps, and so on until the child is able to sequence the entire behavior independently. Ryder is able to put the food in his mouth on his own so that is the last step of the behavior. We help him pick up the fork, hold it correctly, target the food, and then we wait for him to press down to stab the food. Once he masters that step we will then get him to target the food on his own and so on. It was amazing how happy he was when he realized he could stab the food on his own and then take it to his mouth! The OT said hopefully over the next week we will be able to slowly move onto him being able to do more of the steps in the process on his own. The goal of reverse chaining is to make the entire task of eating less daunting by helping him with tasks he does not feel comfortable with and in turn teaching him how to complete the task on his own.

Second, she noticed Ryder still has a weak chew and his tongue is still not properly moving the food from side to side in his mouth while chewing. The OT feels this all goes back to his low muscle tone. During her next session she is going to show me some exercises to do with him in order to strengthen his muscles to help his chewing become more effective. She said that his weak chew could be the reason he spits a lot of food out because he gets frustrated with chewing, but doesn't feel comfortable swallowing what is in his mouth. Also, this could be another reason he sees eating as a daunting task. If you were not able to chew your food would you want to eat?

Third, she brought a special cup for Ryder which is called a "nosey" cup because it has a cut out on one side which allows him to drink without having to hold up his head (which he has trouble doing because of the low muscle tone). This cup holds smaller amounts of liquid than a regular cup, but Ryder is able to drink great out of it! We will let him drink out of this cup for the majority of the time until we can get his muscles stronger to make drinking out of a regular cup easier.

After we finished going over all of the feeding concerns we moved on to working on the stairs with Ryder. She lined up some animals on either side of every few steps. She then had Ryder walk down the stairs, stop and bend over to pick up the animal and put it in the bag until he got to the bottom of the steps. Then he had to turn around and walk back up the stairs while carrying the bag of animals. This task was to see how well he can do the stairs without holding onto anything, hence the reasoning for him to carry the bag of animals. The OT discovered that he would do the task only when he could hold onto one of her hands. She also noticed that he has a pretty big issue with balance which is causing him trouble on the stairs. The last thing she said that is probably causing him issues goes back to having the low muscle tone. For now, we are going to work with Ryder on going up and down while holding onto one of our hands.

The OT is going to be coming back on Tuesday next week to work on the feeding concerns during lunchtime. She also told me we should have the physical therapist (PT) come to do an evaluation on Ryder. He is not delayed in his gross motor skills, but the PT is who would help us with his low muscle tone. The PT will be able to determine just how much muscle tone he has and give us activities and exercises to do with Ryder to help strengthen his muscles. The request for PT has been put in at their office so now I am just waiting to get a call to schedule their visit.

Friday afternoon Ryder's new speech therapist (ST) came to the house for her first session with Ryder. (Our other ST is now on maternity leave) I will just say that I am not a fan of this woman at all! She showed up at 12:30pm (the scheduled time) and then we went to the playroom which is where we have all of the therapy sessions. She never introduced herself to the boys, she left her jacking on the whole time, and she called Ryder by the wrong name! She did three activities with Ryder which had nothing to do with the skills we have been working on with the other ST. After that she wrote up her paper and scheduled another visit for next week (normally it is only every other week, but I know Ryder needs more so I didn't say anything) and left. Her total visit time was 25 minutes and the ST sessions are supposed to be 45 minutes long! I did call his case manager about the visit and she explained that all of our old ST's clients had been split up between other ST so they were all overwhelmed at the moment. She told me to see how next week goes and if it is still not acceptable (to me) that she will speak to her. I know Ryder felt very uncomfortable with the new ST because he hardly said a word and he was very talkative with the OT earlier in the day. I hope things get better because speech is one of our main concerns for Ryder and it would be horrible if he misses out on good ST until the old ST comes back in April.

Lazy Morning

Defeated....by a 2 Year-Old

The past few weeks Zak has been acting up non-stop. He seems to have forgotten how to listen and all of our normal discipline seems to have no effect on him anymore. The most concerning and frustrating is how physical he has become towards Ryder and myself.

In the last week we have found 2 bite marks on Ryder's back and when we ask Zak if he did that he answers "I bite Ry Ry. It hurt"! Yesterday was by far the worst day though. I caught Zak biting Ryder a total of about 8 times (1 time while Ryder was sitting in my lap!) with 2 times resulting in full mouth marks on his back. Each time I caught him in the act I explained it was not nice and he would go to time out for 2 minutes. This seemed to have no effect on Zak at all.

Zak has also been acting up horribly while Ryder's therapists are here with us. They are all very good about bringing activities for Zak to do as well and involve him in all of their sessions. On Wednesday Zak slapped me across the face when I tried to get him to give a toy back to the special educator since she was packing up and leaving. And this morning he got upset because he wanted to drink out of Ryder's cup which led to him throwing his cup at me (still filled with milk).

Ben and I have talked a lot about this and are trying to figure out what is going on with Zak. At first we thought maybe he was jealous of Ryder for spending time alone with me even though it was going to doctors (Zak doesn't know that though). So we have Ryder spend the weekend with Rich & Laura so Zak could have his alone time with Ben and I. That didn't seem to make a difference in his behavior. Now Ben and I are wondering if his behavior is from the loss of the TV in their playroom. They did watch movies in the playroom during the day while I did some chores, but they didn't have it on all the time. I am starting to limit how much TV they watch in the living room now because I fear he is turning into a TV kid. I was a TV kid, grew up with it in my bedroom and still to this day I need the TV on to fall asleep. I personally don't have too much of an issue with kids watching TV (appropriate shows and movies for kids of course), but if this is playing a part in his behavior I will limit it!

Since the time outs don't seem to work we have resorted to spanking him which also has no effectiveness. He just looks at you and laughs or he hits back (he is very much an eye-for-an-eye kid). We have also tried sending him to his bedroom alone for a little bit, but that just makes him mad which results in some type of misbehavior (tearing up books, throwing things, etc). I have thought about trying to take away toys or other things when he misbehaves, but to be honest there is nothing that I could take away that he would really care about or even notice!

Yesterday Zak had me in tears because I am just at such a loss with how to deal with his behavior! At one point I left him in the playroom and brought Ryder to the living room to play with me. After a while he calmed down, opened the playroom door and came downstairs with us. I thought maybe he had figured out his bad behavior would result in being left alone, but no such luck. As soon as he came downstairs he walked over to Ryder (who was sitting in my lap) and tried to bite him again! I was so glad when Ben walked in the door and could take over for the evening because I was really DEFEATED by my 2 year-old. Ben ended up putting him to bed early because he continued to misbehave, not listen, and seem pretty much immune to all of our discipline methods.

This morning he was very sweet when I went into their bedroom. I was truly hoping for a much better day. Unfortunately, while Ryder's therapist was here Zak decided to throw his cup (filled with milk) at me because he wanted to drink from Ryder's cup. After we explained to Zak he could use Ryder's cup once Ryder was done he became very mad and proceeded to grab Ryder's place mat and spill all of the milk and food everywhere. Needless to say, Zak has spent quite a bit of time on the stairs in time out today and it is only 10:30am!

This feeling of being defeated by a 2 year-old is horrible. I feel like I am missing something that is setting Zak off into these fits of misbehavior...

If anybody out there has any discipline ideas feel free to share, please. I am just about ready to send Zak off to toddler boot camp...if I could find one!

Blogging Boldly

The last few weeks I have realized that I start many of my conversations with close friends and family by saying "I made a post on the blog, but I didn't include everything because...." and I think I need to feel that I can put anything on the blog that I would say to a friend and family member. This blog started out as a place for me to keep friends and family updated and then slowly turned into a journal for me to write about my family, events going on and so on. There really is no reason why I should feel I need to leave certain details out or not include how I am feeling or what I am thinking. So now I am going to start bold blogging as a fellow blogger has talked about on her blog.

Ryder's Appointments & Re-Evaluation

Last night I received an e-mail from the genetic counselor that works with Dr.Hamosh (Ryder's geneticist at Hopkins) with great news for us. Ryder's bloodwork came back normal for all of the metabolic things and he is negative for Rett Syndrome. But then she also said they have been unable to schedule his testing because the insurance is coming up saying inactive. So this morning I called and spoke with somebody at Hopkins to give them the correct insurance information. At the end of that phone call she said she would call me once all of the tests were scheduled to give me the dates and times. I am not a big fan of having no say in the dates or times, but I know we will work it all out. Well, I was shocked to get a call back from her already to give me the dates!

EEG Test: January 21 at 3:30pm (he has urology appointment at 11am)
Audiology: February 1 at 9:30am
Kidney Scan: February 1 at 11am
Opthamology: February 1 at 2pm
MRI: She will call back with that date once she gets the call to let her know when it is

Looks like those two days will be pretty busy for us. I am hoping Zak will be able to spend the day with Rich on January 21 because, as luck would have it, Ben is out of town January 20-22! And then on February 1 Zak is already supposed to be at daycare (Ryder would normally have his group therapy class) so that should work out fine. The MRI is a test that Ryder will have to be sedated for so that is probably my least favorite one they are scheduling, but I will definitely update everyone once I know that date.

We are still waiting to hear from Kennedy Krieger to schedule the testing that they want to do also. That testing includes ADOS (Autism testing), Neuro-Psychological (test how his brain responds during certain tasks), and screening for the Early Achievement program.

This morning Ryder's special educator came for a sessions. Today she spent the whole hour doing her 6 months re-evaluation with Ryder. She gave me some basic results from her testing which pretty much all show improvement in most areas which is great! He is 29 months old now and the testing showed....

Self-Help: 18 months
Social-Emotional: 20-24 months (She told me this is probably not accurate for him since he does well 1-on-1 and with adults but has "issues" with other children, so it is lower in "real-life" settings)
Gross Motor: 24 months
Fine Motor: 27 months
Cognitive: 20-24 months

She then explained that a result of 21 months or younger would be a 25% or more delay for him. With his speech delays, the ones listed above, and his Klinefelter's he still definitely qualifies for services (the genetic disorder will automatically qualify him). Even though some of the above results show this delay he has shown tremendous improvement from where we started! Yes, we have noted some regression with certain skills and hopefully we will find a reason with all of his testing but what we FOCUS on is the great improvements he is making!