Dear Son Swine Flu Medical Update #4 & Swine Flu Q & A

After a horrendous day on Saturday, Dear Son started to stabalize on Sunday. I really did not feel very optimistic about things on Saturday and if the truth be told, I was really quite down and could not even remotely anticipate that things might ever change. I was so distraught thinking that I'd never really see my boy as the happy boy he is. Being thisclose to a trip that would have lasting happy memories was like pouring acid on a wound. After his last hospitalization in May, I was determined to get this kid out of there and have some fun and feared I had waited too long. The thought of losing him was overwhelming.

Your comments, thoughts and prayers have been a great source of strength for me. While I can't update you from the hospital, I can read your comments there. I know a lot of you think that I am really a very strong person however when it comes to Dear Son, probably not so much. While I am fiercely passionate about caring for him along with overly doting and syrupy, I am probably not too strong. Add to the fact that I have an incredibly weak stomach, all of this constant suctioning and getting rid of secretions only adds to the stress. I think I'll feel much better when he's off the ventilator and when he can open his eyes.

Dear Son does appear to be stabalizing somewhat or at least taking some baby steps in the right direction. In the last twenty four hours, the fevers have disappeared. They were able to increase the feeds and made the decision to start him on his g-tube feeds to try to normalize his potassium levels and to give him some strength to help him breathe on his own. His potassium remains low; they were giving him potassium directly and as of yesterday began adding it directly to his IV fluids.

In addition, they started him on Lasix to get rid of some of the fluid that he was holding. I had questions regarding the Scopolamine patch and adding the Lasix since the Scopolamine patch dries up secretions, doesn't allow him to sweat and helps hold/retain his urine whereas the Lasix does the opposite. They explained that the Lasix works directly on the kidneys as opposed to the Scopolamine patch which is an anti-cholinergic. I also wanted to know what the effect of the Lasix would be on his potassium levels since it's getting rid of the water. They said it was a good question and that with the Lasix you can excrete the potassium and since he already had low potassium, they'd have to watch it. He should be o.k. though since not only are they giving him the potassium but when they increase his feeds, the electrolytes will normalize themselves.

In addition to increasing the feeds and adding the potassium, they are going to more aggressive in decreasing the vent settings to get him to breathe some on his own. On Sunday, they got the oxygen settings on the vent down to 45%, with a PEEP of 10 and breaths of 16; they decreased him on Monday to 40% oxygen, with a PEEP of 10 and breaths of 12. While the oxygen setting of 40 is typically o.k. for extubation, his PEEP was rather high at 10. They decreased that to 9 later in the day and decreased it to 8 today. The breaths were at 12 and there were times yesterday when he didn't breathe over the vent* at all and then other times when he might be 3 breaths over and as high as 9. If all goes well, they will try to extubate him on Wednesday or Thursday. They had previously discussed that if and when they do extubate him, they will probably have to transition him to the Bi-Pap machine to help him breathe as opposed to letting him breathe on his own with no ventilator support.

The chest x-ray was actually worse yesterday than the day before. The right lung appeared to have more collapse and the left lung lower lobes a little worse as well.

They are continuing his chest pt which helps clear the secretions from his lungs.

Blood gases are done every six hours and labs done every twelve hours which is an improvement.

So to summarize, Dear Son remains on a ventilator at Big Academic Medical Center Children's Hospital. He is on Vancomycin/Benadryl, Zosyn, Fentanyl for pain and Tamiflu (The Tamiflu was a five day course however they they decided to keep him on it to minimize flu symptoms. When they saw the renal electrolytes trending up, they decreased to the Tamiflu to once every 48 hours until he is off the ventilator.) They have added potassium, started him on g-tube feeds and decreased the ventilator settings. His chest x-ray looks worse however it is not uncommon for chest x-rays to lag behind. He has a central line, an arterial line and a foley for urine. His blood pressure is remaining relatively stable. Dear Son remains unconscious and it still holding quite a bit of fluid.

In addition, I met with the Section Chief of Infectious Diseases at Big Academic Medical Center. He's the guy who decides on the antibiotics for this hospitalization. I asked him several questions related to the swine flu:

• Q-Is it true that it takes two weeks for the swine flu vaccine to be effective? A-He said it probably never gets to the point where it's really 100% effective. Typically what a vaccine does is to make the flu milder.
• Q-Will he get the vaccine before he leaves the hospital. A-No.
• Q-Now that Dear Son had the swine flu, can he get it again this season? A-No.
• Q-At Dad's place of employment, once they heard Dear Son had the swine flu, they sent the Haz Mat team (complete with mask and gear) in to clean his desk. Is this an appropriate level of concern? (I should tell you that I couldn't stop laughing when I heard they did this.) A-No. People are overreacting to the swine flu.
• Q-At Dear Son's school, they offered to come in and clean the classroom after hearing that Dear Son had the swine flu. Is that necessary? (Normally, the classroom is kept extremely clean as the staff is quite diligent about hand washing and sanitizing with the four students in Dear Son's class.) A-No. Normal cleaning is fine.
• Q-Any deaths at Big Academic Center from the swine flu. A-No.
• Q-Is the swine flu seven days? A-Any flu is 7-10 days.
• Q-If Dear Son got the swine flu vaccine, would he be on a ventilator? A-No. If he got the vaccine, he most likely would be at home with a cold (milder version of the swine flu) instead of on a ventilator. *Note: Dear Son was scheduled to get the swine flu vaccine at Big Academic Medical Center and they ran out. This was 6 days prior to him getting the swine flu.
• Q-Does Big Academic Medical Center have a website where I can get more information on the swine flu. A-Check out http://www.cdc.gov/ for information.

Late last night, around ten p.m. Dad called me regarding Dear Son. His central line was leaking blood so they gave him something to break up the blood clot but it didn't work. They decided to use another port and will make a decision today as to whether they will replace that line.

Thank you for your continued prayers for Dear Son. Today is probably the last day I will be able to post for a while. Dad came down last night so I could go home and sleep since I have to work today. If you'd like to read all of my posts related to the swine flu, click here.

**Note: Dear Son is seventeen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a mutation of the ARX gene. He also has a progressive neurological disease.

*Note: When you are on a ventilator, it is doing all of the breathing for you. You want the patient to begin breathing "over" the vent so they begin to do some of that themselves. The easiest way to understand this is thinking about the extubation. When they remove the vent tubing from you, they typically have a lot of doctors standing around the patient. As they remove the tube, they essentially wait for you to "catch" your breath or start breathing on your own. It's pretty scary when this happens because you are essentially waiting for the patient to breathe. The patient then gasps for air and you hope they begin breathing on their own. The danger in being on the ventilator too long is that when you body gets used to the machine doing the breathing, it gets much harder to wean you off of the vent. In addition, when the patient is ill and weak, it's harder yet. For patients like Dear Son, who have a progressive neurological disease, the job becomes that much tougher since their baseline status (meaing what they can do when they are well) is so weak. In addition, the first twenty four hours after extubation is critical. At that time, they will know if the patient can breathe on their own or if they will have to put them back on the ventilator.

Dear Son Swine Flu/Pneumonia Medical Update #3

Thank you all for your prayers and well wishes for Dear Son. Here is a status update.


The good news:

• Dear Son is off the norepinephrine (blood pressure medication). This is a huge deal according to the Attending Doc.
• He is running fewer fevers.
• They started him on g-tube feeds at a rate of 5 cc per hour and as of today, increased him to 15 cc per hour. The added nutrition will help make him stronger and help him recover.
• Blood gases are done every six hours, as opposed to every two hours.

The not so good news:

• He still requires a lot of help from the ventilator. I had hoped that perhaps he'd be vented another day or so however they told me it would be another week or so. Even if the settings are decreased, there are still a lot of other things he needs to do before they can take him off of the ventilator. He needs to get stronger, be able to breathe on his own, etc.
• The chest x-ray still looks pretty bad. His entire right lung is filled with fluid and the lower part of the left lung. His left lung looks worse than yesterday.
• He remains unconscious. He is retaining some fluid and his eyes are swollen shut. He left eye is so swollen you can barely see his eyelashes.
• He had a pretty big seizure yesterday afternoon around 3 p.m.
• His potassium is low.

I spoke with Dear Son's doctor at length yesterday to get a better understanding of the intense concern over the swine flu. I had thought that the MRSA pneumonia would be worse than the swine flu since it is a bacterial infection that is hard to treat however the swine flu is proving to be a bigger challenge. He spoke to our ICU Director and she relayed a story of a Texas hospital where all of their swine flu ICU patients died. While the swine flu is more prevalent in the western suburbs where I live, he does feel good that Dear Son is off of the norepinephrine. He also has great confidence in the ICU team here at Big Academic Medical Center. He said in the last ten years, he thinks this ICU team is the best he has seen anywhere. They are especially good with respiratory issues.

At Big Academic Medical Center, they have a strict Isolation Policy Guidelines. You can either wear a gown/mask and gloves at all times when you are in the room with a patient with the swine flu or you can choose not to wear any of it. If you wear the gown/mask and gloves, you can remove them when you leave the room and go anywhere in the hospital, which includes the restaurants, laundry room, family vending area (with microwaves). If you are a parent and choose to "room in", meaning stay with your child, you can forgo the gear however you are not allowed to go anywhere except the bathroom. Since I stay with Dear Son 24/7, I am not leaving the room to go anywhere except the bathoom. The gloves, mask and gown are very hot and I can't wear that 24/7 without sweating to death. The room door must also be closed at all times. I caught a cold and lost my voice from the vent in the room since it blows air on me when I sleep. On the flip side, it's really uncomfortable in there since there isn't any air circulation with the room closed all the time. I totally understand the precautions however it's making it challenging in terms of food. I have to bring my own food and can not use the microwave or anything else anywhere.

Dad took vacation days to visit Dear Son this week at the hospital. When they heard Dear Son had the swine flu, they sent in a Hazardous Materials team in to clean his desk. I asked the docs if this concern was appropriate and from the swine flu cases they are seeing, this is appropriate.

In summary, Dear Son remains hospitalized in the Pediatric Intensive Care Unit at Big Academic Medical Center with the swine flu, a viral pneumonia and MRSA. His ventilator settings are 45% oxygen, 10 PEEPS and 24 Ppeak. He is on Benadryl (to prevent Red Man Syndrome from the Vancomycin), Vancomycin, Zosyn, Fentanyl (for pain), Tamiflu and potassium. He gets daily chest x-rays, chest pt and nebulizer treatments every four hours and blood gases every six hours. He has a central line, an arterial line and a foley for urine.

I was really down and out yesterday with regards to Dear Son. I need your continued prayers to help him get well. I really need to see Dear Son open his eyes again and to see him smile. I remember back in 2006, when he had the MRSA pneumonia and I was hoping for more time to see him grow up. Now that I've seen him all grown up, I want more. I want more time with him. I want to see him laugh again and go to Florida for his Make a Wish trip. In reality, it will take him quite some time to recover.

I do have confidence in the ICU team and and fortunate to have such good doctors. Ped Neuro Doc has just been outstanding. He takes such good care of Dear Son. Whenever he's been hospitalized, he always comes to see him even if he's not the attending that week. This alone has been really helpful. When you are in these types of situations, it really helps to have someone that knows Dear Son so well and is able to give me real answers in terms of his recovery. I've been in a few situations with Dear Son at Big Academic Medical Center where I thought that the only hope I had was a miracle and Dear Son pulled through.

Please continue to pray for Dear Son. If you have any prayer groups, that would be great as well. I have always believed that in addition to having a good medical team that the power of prayer makes such a difference for Dear Son. Thank you for all of your wonderful comments, thoughts and prayers. While I am unable to write any posts at the hospital, I can read your comments on the big screen t.v. in the room. Your comments have given me strength to help me get through this with Dear Son.

To read all swine flu/pneumonia updates for Dear Son, click here.

Note: Dear Son is seventeen and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. He also has a progressive neurological disease. You can read more about him in the Journal of Neurology. The link is in my sidebar.

Dear Son Medical Update #2~Diagnosis: Swine Flu, Pneumonia, MRSA

On Monday, Dear Son (DS) tested positive for Influenza A. As you may recall, Dear Son is at Big Academic Medical Center and was being treated him for the flu and a viral pneumonia. During that time, I met with the Section Chief of Infectious Disease(SCID), who is an expert in unspecified fevers, and he was confident that they had figured this out. While the blood cultures and swine flu test were still pending and would take a few days, this is what Dear Son was treated for. I didn't share the flu information when I updated you earlier in the week, because at that time, while they suspected the swine flu, I didn't have the test results back. I met with the Section Chief of Infectious Disease and he had explained to me that 88-90% of the patients there that tested positive for the Influenza A, would test positive for the swine flu and that's exactly what happened with Dear Son.

What was problematic for me was that in early October, I spoke with Dear Son's physicians with regards to getting the swine flu vaccine, along with the seasonal flu vaccine and the pneumonia vaccine. Dear Son had a pneumonia vaccine in 2002 and I had met with the Section Chief of Pediatric Pulmonary in August for an office visit to determine if he needed to get another pneumonia vaccine (Normally you need only one in your lifetime but because DS has chronic lung issues, it was recommended he get another one.). I wanted to know if I could get all three vaccines done on the same day, Monday, October 26th, because DS was off school and it's hard to get him around. Dad must go with on all office visits because we don't have a wheelchair van and he has to lift him. They had conversations to determine if he could get them all in the same day, how many injection sites they needed to do and if they would have the vaccines by then. We also needed to determine which type of vaccine he needed to get (live or dead) and it was determined that with DS's pulmonary issues, he could only get the injectible version and not the nasal mist. It was set up and he was approved to get all vaccines on that day.

When we arrived on that day, they were out of the Swine Flu injectible vaccine. Little did I know that this would be a huge problem for Dear Son. On Saturday, October 31st is when his fever started. I specifically asked the Section Chief of Infectious Diseases what the incubation period is on the swine flu and was told 1-5 days. I asked him where DS got the flu and he thought he most likely got it at school. I also asked if DS would have gotten the swine flu vaccine on Monday, the 26th, if he still would have gotten the swine flu. He said that if DS got the vaccine, he probably would not have gotten the swine flu. Please understand that it would have still be possible for DS to get the swine flu with the vaccine, however he was saying it most likely would have prevented it. I learned all of this information earlier this week but didn't want to update the blog until I had the actual test results that were positive for the swine flu and I got those yesterday. He is also having conversations with those departments to determine why the vaccine was promised and not delivered for someone like DS. Typically, the city gets the vaccines, they go to the hospital then are distributed to the departments and they allocate the vaccines to the appropriate patients. In our case, they aren't certain what happened and I should note that we came down just for the injections and neurology clinic as not in session that day, another department was.

In addition, once Dear Son tested positive for Influenza A, they required me as his primary caregiver, to start on Tamiflu and gave Dad a prescription as well to help prevent the swine flu.

In addition to the swine flu, Dear Son has a big infection in his right lung. It is nearly all white on the x-ray. At this point, the blood cultures haven't come back with a bacterial infection so it is still considered a bad viral pneumonia.

Pediatric ICU policy states that all patients must be tested for MRSA. As you are aware, Dear Son tested positive for MRSA in 2006 and had two MRSA penumonias and was vented at that time as well. Many of you read my Mother's Day blog where I almost lost Dear Son on Mother's Day but the blood transfusion saved his life. Dear Son tested positive for MRSA this week as well. I asked the Section Chief of Pediatric Pulmonary, who is DS doctor, if that meant the pneumonia was a MRSA pneumonia and they can't say. What is does tell us is that he has a pneumonia and he has MRSA which means that they need to treat him with antibiotics for the worst case scenario. (As an FYI, typically with a MRSA pneumonia, you have really high fevers, say 105 or so and because it's a bacterial pneumonia, there are protocols for the length of time they will be on antibiotics. For example, often Vancomycin, a powerful antibitoic will have a ten day course.)

So to update, Dear Son has the swine flu as his primary diagnosis and then a bad pneumonia and MRSA on top of that. The swine flu can have a fever component (If I recall the SC of ID said that less than 10% of patients with the swine flu have a fever.) Dear Son remains on a ventilator.

On Tuesday, Dear Son was started on the ventilator at 100% and by Wednesday, his settings had decreased to 55% oxygen. A simple way to evaluate what is going on is when the vent settings are going up, you are getting worse and when they are going down, things are getting better. Dear Son continued to have fevers on and off. They were able to stabalize the blood pressure with norepinephrine and also stabalize many things: glucose, sodium, potassium and magnesium. He remains on the norepinephrine though to keep his blood pressure up.

On Thursday morning they attempted to get a chest x-ray which required Dear Son to lie on his back. Normally Dear Son can not manage his secretions when he is well on his back and I told them that he could not lie on his back for any time longer than necessary. They ended up having him on his back some 20-25 minutes at which point I said I had to turn him on his side. I could hear the secretions and while they can suction him, I honestly can't stand that and would prefer to prevent these kinds of things. For the record, I have a horribly weak stomach and when he is on the ventilator, it is ungodly stressful for me and for DS. The nurse thought she knew everything and was going on on how Dear Son was doing just fine on his back, his oxygen saturations were lovely, etc. I left the room to go to the washroom and came back and she was totally white faced. Dear Son's had desatted and as a result they had to turn the vent settings up from 55 to 100%, except that now they had a problem because he wasn't getting enough oxygen even though they were at 100%. There was nothing more they could do. She asked me if it might be possible he was having a seizure since she couldn't get his oxygen up and I said no but I swiped the magnet for his VNS anyway. At this point the charge nurse was in the room and x-ray was standing there wanting another chest x-ray because the x-ray was bad. It was now 5:45 a.m. I told them that they might want to hold off on the chest x-ray until the Attending Doc comes in around 8 a.m. (Yes, they have docs on call all the time and typically the AD is there around 6:30 or so.) At that time, they could talk to her, DS would have had two hours to stabalize and they would have a full staff there to help DS should things get worse. I said they could still do a chest x-ray at that time however since they couldn't get his oxygen up and the vent was at 100%, there was no place to go. I was trying to avoid a crisis when everyone wasn't there. They agreed.

It took a few hours before DS stabalized. He remained at 100% for around two hours or so. I explained to the nurse that while it may seem that Dear Son can tolerate things, he really can't. I think she learned that they need to listen to Mom:)

He continued to have fevers throughout the day and when I left last night, he was on 75% oxygen on the vent with a PEEP of 8. The plan was to try and decrease the vent settings and increase the PEEP to help him out more. (A PEEP is essentially where they have pressuried air that holds the lung air pockets open after they exhale so they don't compress. These are my words for the PEEP explanation.)

Dad had to leave earlier this week after coming down with a fever. He got sick after spending one day in the room. I left last night and have a terrible sore throat and can't speak.

So to summarize, Dear Son is at Big Academic Medical Center and has the swine flu, a bad right lung pneumonia and MRSA. He is being treated with Vancomysin and Zosyn as the antibiotics, Fentanyl for pain, Tamiflu and norepineprine to stabalize his blood pressure. They continue to treat his fevers with Tylenol and Motrin. They are giving him chest PT every four hours and take blood gasses every four hours. He has a central line, an arterial line and a foley for urine. He is also having more seizures so they took all seizure labs yesterday. He had a good night last night and the vent settings have been reduced to 50% oxygen.

They expect the swine flu to last seven days and during that time, he will be pretty sick. They will continue to treat him with the antibiotics and the plan is to increase the PEEPs to try and get the vent settings down.

I spoke at length with Dear Son's Pediatric Neurologist, who is DS primary doc. He has been his doc since he was ten weeks old. I asked him if he thought Dear Son would live. He thinks that Dear Son will live however he is not sure how easy it will be to get him off of the ventilator. He explained that unlike other physicans, he spends a lot of time in the ICU and knows these physicians well. He stated that for those patients who have had the swine flu there, they have been very sick for a good week or so. He is very confident of the ICU team in terms of managing these types of issues. I also wanted to know if the fact that Dear Son is so weak at baseline and has a progressive neurological disease if that makes it harder. While it does make it harder, he has other patients that are more severe than Dear Son and have been in the ICU for other issues and the team has been able to pull them through. While his words were comforting, I still do not feel very good about this situation however it did help a lot. I pray that he is correct.

I do know however that getting him off of the ventilator will not be an easy task and they have told me that they will probably need to get him some support before he can breathe on his own. I have had conversations with several of his physicians around this issue.

I would also strongly recommend that if you have a child with chronic health conditions like Dear Son, that they get the swine flu vaccine. I asked the Section Chief of Infectious Diseases who is most likely to get the swine flu and he said children with asthma and those with chronic illnesses.

Thank you for all of your prayers for Dear Son. It is very comforting to know that everyone is praying and pull for Dear Son and for us. I am beside myself with grief over this situation and it's killing me not being at the hospital right now. I am going to try and get some rest.

I do have pictures of Dear Son in the ICU, that I took with my new camera however I'll try and get those downloaded later today. I wanted to get the update done for you first.

I also want to thank Laura, Angela and the people at the Make a Wish Organization who have confirmed that they will re-schedule Dear Son's Make a Wish Trip once he's better. In the meantime, we'll just hope that he's on the mend for his 18th birthday next week.

To read all swine flu medical updates for Dear Son, click here.

Note: Dear Son is seventeen years old and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. You can read more about him in the Journal of Neurology by clicking the link in my sidebar.

So Long Make a Wish Trip...Dear Son in the ICU on a Ventilator

We were scheduled to leave for Florida for Dear Son's Make a Wish trip next Monday... but now that won't happen.

On Saturday evening, Dad picked up Dear Son around 7:30 to take him overnight. He works 12 hour days so that is when he picks him up. Around 10 p.m. Dear Son broke out in a fever (he had been totally fine all day Saturday) so he called me and said that he had a fever. He said he was going to give him some Tylenol and I told him to watch the fever since Dear Son can deteriorate fast meaning his breathing can get very labored. I asked him to call me at midnight when Dear Son gets his meds if things get worse. I talked to Dad the next morning and Dear Son still had the fever so I told him to give him the "adult" dose of Tylenol. (Dad had given 500 mg. and the bottle said you could give up to 1000 mg. which he did.) Dad had difficulty controlling the fever with Tylenol and around 3:30 in the afternoon he called me and said that it was too early to give more Tylenol but the fever wasn't going down. He was bringing him back home to my house.

By 6 p.m. I had arrived home and Dear Son still had a fever. His breathing wasn't great but it wasn't terribly hard yet. His fever was around 101.4, I really don't remember right now but I knew he had to be seen to figure out the source of the fever. Dad wanted to take him to a local ER but I wanted to take him to Big Academic Medical Center since I knew if things headed south, they could treat it and it would save a trip from the local ER transferring him to Big Academic Medical Center. I paged his pediatric neurologist (who functions like our pediatrician) and he said to take him to the ER immediately.

We arrived at the ER and they took his history. Some time later (I don't have a lot of time right now so I'll try to give you the abridged version.) the Supervisor of the Physicians (that's how he referred to himself) came in and checked him out. He said the physical exam shows sepsis and they are treating him as such until they have more information (they took blood work). He asked if I wanted to donate Dear Son's organs (I said no.) and asked me if thing proceeded what decisions have I made (meaning do I want a Do Not Resusitate) and I said that no, I could never do that. The ICU doc came down and assessed him and they asked me the same questions. How depressing...

Around 2 a.m they transferred him to the ICU. The fever continued to go up and they couldn't get control of it. They put him on an In-rebreather at 12 liters of oxygen and had started him on Vancomycin and Zosyn. Neither appeared to be working. Dear Son has an allergic reaction of sorts to Vanco-he gets Red Man Syndrome. It's not a "true" allergic reaction but it means they have to run the Vanco very slow and give him Benadryl which they did. Of course, being the Dream Mom Super Organizer that I am, I have his allergies or reactions to Vancomycin and Zofran documented on his Emergency Information Sheet.

In desperation yesterday (my words), the ICU Attending told me that she contacted Infectious Diseases. She said that they may have to vent Dear Son but she wanted them to come and look at him to see if they were missing anything. She said that they can't get control of his fever. They had been giving him Tylenol and Motrin to get it down and it wasn't working. (As an FYI, I had taken Dear Son on 10/26/09 and gotten his seasonal flu shot and pneumonia vaccine at Big Academic Medical Center but couldn't get the swine flu injectable vaccine because they ran out.) They had previously contacted Dear Son's Pulmonary Doc (She's the Head of Pediatric Pumonary.) there and informed her what was going on and had gotten instructions for the chest pt vest and nebulizer schedule. They had been giving Dear Son nebulizer treatments as soon as we got to the ER so this was just a more schedule. As Dear Son deteriorated, they called her again to see if she could come see him right away. The ICU doc said that they were going to turn the In-rebreather up to the maximum setting to help Dear Son. By now he was on 18 liters of oxygen which is the maximum for that (Some places the max is 15 liters from what I understand but here it's 18 liters.).

Eventually, the Big Wig at Infectious Diseases thinks he's figured it all out. He's really nice and it's a good conversation. He thinks it's a viral pneumonia and they put Dear Son on the Bi-Pap machine at 100%. Dear Son does better and we are all happy. Once he gets some rest from breathing too hard, they'll try to reduce it to 60% over time. His fever begins to come down and we are now one happy family.

During the day, Dear Son had been crying out repeatedly, which was stressing me out and I couldn't figure out what was wrong. I asked if there was something for pain for him but eventually, when I saw his fingers moving, I figured out it was seizures (fevers can raise the seizure threshold) and I used his VNS magnet and they stopped. He didn't cry anymore and things were good.

I left the hospital last night after Dad arrived to get some sleep at home. I have to work today and then I would come after work and be there the rest of the week.

That was yesterday. I had a good night's sleep and Dear Son appeared to be on the mend.

In the last hour, things have dramatically changed. His fever began to spike in the morning and his breathing deteriorated. I just got a call that they had to put him on a ventilator asap and put a central line in. Things are not looking good.

I need to cancel work and get back down there. I don't know when I can update you again. Please pray for Dear Son. I don't know if this post makes sense or if I included everything but I don't have time to proof it right now.

Restrooms for Severely Disabled at O'Hare Airport? Do they exist?

We continue to be excited about Dear Son's upcoming Make a Wish trip to Disney World. I spent some time yesterday planning for the trip however there is one issue I can't get resolved. I've written before about my concern for our plane ride to Orlando. My biggest concern is that I will need a place to change his diaper before boarding the plane. We will be boarding an early flight and leaving our home at 5:15 a.m. for the airport. Prior to that, I will have to give Dear Son his formula via his feeding tube and his seizure medications. At some point, I will have to change his diaper prior to boarding the plane. Once I change his diaper, then he should be able to make it on the plane ride without going to the bathroom. I will be bringing changing type pads to set on the seat so if he does have an accident, that the airplane seat won't get wet. My problem is this: no one can tell me where I can change him.

We are leaving from O'Hare International Airport, the busiest airport in the United States. I contacted United Airlines today and explained the situation, that I have an 18 year old male, who is severely disabled and I need a place to lie him down to change him. I was told that "there isn't any such room like that to change his diaper and that he "must" use a restroom." That was unacceptable. Dear Son can't use a restroom because he is disabled. He can't stand up and I use a hoyer lift to lift him up. He can't sit up well enough to even sit on a toilet, let alone let me know when he needs to go. He is not toilet trained. A typical handicapped bathroom is not adequate. I need to lie him down to change him. Ideally, I'd like a large restroom with a bench in it to lie him down on. Something like a family restroom. I am looking for a cot to lie him down, someplace with some privacy to change him. This should not be an issue in 2009 nor an issue for the world's busiest airport.


I asked to speak to her supervisor. I got a young man who told me that, "there should be someplace there to change him" however when pressed, he didn't know where that was. I asked him to check for me and he contacted the agent at O'Hare who said that they don't have a "specific area" but that there were bathrooms for disabled. I said that we can not use a handicapped bathroom since he needed to lie down and he said to, "just check when we get there". I explained that I needed to check now since I can't wait until the last minute. He had no other answers.

Prior to this call, I had tried to find answers on United's website. There were none. I tried to submit a question however it only accepts questions for "past" flights and the form won't allow questions on future trips or anything else as it requires you to input flight information from past trips to submit the question. They recommend you contact United at their 800-864-8331 for questions relating to upcoming trips, which is what I did. That isn't a great system however because you can't speak with anyone from customer relations, you can only speak with a reservations agent no matter what you say in the automated prompt menu.

I googled contact information for United Airlines and found an on-line form to submit an e-mail question and did that today. It came back as undeliverable with a failure message.

This is 2009. Dear Son just needs to go to the bathroom like anyone else does before his Make a Wish Trip. Some people have suggested not feeding him so he won't go the bathroom however how mean is that-taking him on a Make a Wish trip and then not being able to feed him so he won't urinate? That doesn't make any sense and no I'd never do that. I've written before on the restroom issue facing the disabled. We tried to go to a movie a while back and had to leave in the middle of the movie because there wasn't a place to change him.

Ideally, what we really need at airports and the like is simply, a family washroom large enough to get in a wheelchair and with a bench of some kind to lie him on, I could change him. I know that this washroom would be used by fathers who take their daughters in to be changed, mothers of kids in diapers, disabled children and the like. This isn't a new issue however. The Great Reporter wrote an article back in 2007 talking about accessibility and family restrooms for the disabled. You can see that article here. They state,

"Family restrooms have started appearing in more public buildings. Will these restrooms one day lead to the elimination of gender-specific bathrooms? Most states now require family restrooms, places where parents or caretakers can accompany members of the opposite sex who need help in the bathroom, in any new facilities, especially stadiums and parks."

They even reference O'Hare Airport as having family washrooms in Terminals 2 and 3 however those restrooms do not have a place to lie down Dear Son. If anyone has used this airport and knows of a place to change him, it would be appreciated. If you have any contact information, other than the main number for United, it would be appreciated. I checked with the Make a Wish Organization and they said that I'd have to contact United because they didn't get an answer. Please understand we are very appreciative of our Make a Wish Trip and just need to use a bathroom like anyone else. You can imagine that our fellow passengers would appreciate it if we can change him prior to boarding the plane as well.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease, seizures and severe mental retardation as a result of a random mutation of the ARX gene.

FYI: Since my previous post, I did get an answer to the ear popping issue with the changing altitude. Since Dear Son can't swallow or yawn to pop his ears, the neurologist suggested giving him an antihistamine a few hours prior to our flight to help with this issue.

"Universal" Gardening: The Enabling Garden at the Botanic Gardens

This photo is of Dear Son, a teacher from the other classroom, and his aides at the Botanic Garden.

Universal gardening, or accessible gardening, is something that makes gardening easier for everyone. This week, Dear Son's class went to the Botanic Gardens to visit the "Enabling Garden". The hands-on teaching garden was created to showcase ways people of all different ages and abilities can garden. It includes vertical gardens, sensory plants and smooth brick pathways making it easier for people in wheelchairs. The "Enabling Garden" featured many adaptive tools and models to illustrate gardening techniques that make gardening easier and more enjoyable. These features include:

• Raised Beds
• Hanging Baskets
• Walled Gardens
• Shallow Pans
• Raised Water Features
• Scenic Overlook
• Discovery Cart
• Tool Shed
• Smooth Brick Pathways

What I especially enjoyed about the enabling garden is that these features aren't limited to people who are disabled; these features can be enjoyed by everyone. As a result, I prefer to call it "universal" gardening to highlight the fact that these features are good for everyone. Universal Design is a term to describe designs that are accessible for everyone. I'd like to think that "universal" gardening would be the same. So what exactly makes this garden accessible or universal?

One of the teachers is trying to push Dear Son up the hill at the Botanic Garden and is having a hard time which makes Dear Son laugh.

Colorful, dramatic, raised garden beds are one of the highlights of this garden. As any true gardener will tell you, back aches or aches in general are easy to come by when you garden. Long stretches of kneeling and bending can be challenging and increase in difficulty as you get older. Raised beds solve this issue so you don't have to bend down as much. When I had a home a few year back, gardening was my main hobby. I would easily spend eight hours or so putzing around in the yard doing everything from planting, edging, mulching, turning the mulch, pruning, weeding and just about anything else I could think of. I'd used those garden kneezies (a foam pad that you lie on the ground to cushion your knees when kneeling to garden) to make it easier. I absolutely loved it. By the end of the day however, you have had a workout and I can see how the raised garden bed would make that easier.

This photo is of my former home where I loved to garden.

Hanging Baskets-At the enabling garden, they showcase hanging baskets that raise and lower on a pulley type chain. This allows the user to raise and lower the hanging basket for watering.

Walled Garden-A walled garden is used to illustrate the concept of vertical gardening. Vertical gardening brings your plants and flowers up to eye level or off the ground making maintenance easier.

Shallow Pans-Shallow pans are raised beds that aren't very deep or wide. The depth allow you to get a wheelchair closer to the bed and the fact that they aren't as wide allows a person in a wheelchair to water all of the plants without having to lean over very far.

Raised Water Features-Keeps the water features at eye level making them easier to see for disabled individuals as opposed to water features on the ground. I can see this feature making it easier for people with a "vertical gaze palsy". Dear Son has difficulty looking up and seeing things that aren't straight out in front of him.

Scenic Overlook-Allows the user to look out over the garden.

Discovery Cart-This feature at the garden allows wheelchair users to pull up to a special cart to explore gardening tools.

Tool Shed-Filled with accessible tools to make gardening easier.

Smooth Brick Pathways-Having a smooth brick pathway is essential for people in wheelchairs. When Dear Son was a child, we had a wooden swing set in the backyard and it was very difficult trying to push the wheelchair over the grass to get there. When the ground was slightly wet, it was even more difficult. A brick pathway would not only make it easier but would look beautiful too. While I didn't visit the enabling garden, I would imagine that the brick pathways would need to be at least three feet wide, which is a standard width for pathways and sidewalks. This would allow adequate room to push a wheelchair. As always, a five foot wide area would be required for turn arounds or to turn the wheelchair around. A pretty brick circle design would be a wonderful visual element in a garden.

Dear Son had a fabulous time. He really enjoys plants at school and I am always amazed at how much kids with disabilities notice the scent of a plant. At school, they do a lot with plants. They take the kids out into the community (Home Depot) to purchase plants, soil and pots. At school, they decorate the flower pots then plant the plants. The plants are then distributed to teachers in the building. The kids are assigned plants to water in the building. Two days a week they water the plants to help them grow. Watering the plants help them with their occupational therapy. Dear Son has a special water bottle (think sports bottle with a flexible spout) that he uses. The therapist puts the water bottle in his hand and has one hand over Dear Son's hand on the water bottle and the other hand on his left arm (Dear Son is left handed.). When the therapist feels a slight movement in his fingers, she helps squeeze the bottle to help him water the plant. This helps Dear Son since she gives his brain time to relay the message to his fingers to move them and this is a higher concept or a little higher functioning than just putting her hand over his and helping him squeeze the bottle. Dear Son also enjoys reading books about plants on the computer at school. He has a switch set up so he can take his head and hit the switch to turn the pages, so to speak, on the computer. He really enjoys it. Yesterday, they purchased some lemon grass at the store and he enjoyed smelling it. It's nice how they use many of their senses in learning about plants. One of Dear Son's favorite things however is when they put dirt on his tray and he gets to put his hands in it. That's how you know he is a real gardener!

Awards: One Lovely Blog

A special thanks to the Disabled Kid's Keeper Blog for these lovely awards. She writes a blog and says those things that many people wish they could say. She also can be quite funny. My favorite post is here where she contemplates checking the "four pose" box for school pictures then decides that it wouldn't be nice to mess with the photographer for four poses of the disabled kid.

As part of the award, I have a series of questions to answer with only "one word" answers. For me, that's the blogger equivalent of tying my manicured hands behind my back, but I'll do my best. So here goes:

1. Where is your cell phone? Charging
2. Your hair? Highlighted
3. Your mother? Alive
4. Your father? Deceased
5. Your favorite food? Filet Mignon
6. Your dream last night? Sexual
7. Your favorite drink? Tea
8. Your dream/goal? Dear Son could talk.
9. What room are you in? Living Room
10. Your hobby? Tablescaping
11. Your fear? Obama (Federal Deficit, Healthcare Reform)
12. Where do you want to be in 6 years? Married
13. Where were you last night? Home
14. Something that you aren't? Patient
15. Muffins? Homemade
16. Wish list item? Chandelier
17. Where did you grow up? Suburbs
18. Last thing you did? Paint
19. What are you wearing? Shorts
20. Your TV? Flat
21. Your pets? Cat
22. Friends? Lots
23. Your life? Good
24. Your mood? Happy
25. Missing someone? Sister
26. Vehicle? Used
27. Something you’re not wearing? Shoes
28. Your favorite store? Jewelry
29. Your favorite color? Pink
30. When was the last time you laughed? This morning.
31. Last time you cried? Don’t remember.
32. Your best friend? Funny
33. One place that I go to over and over? Arboretum
34. One person who emails me regularly? Dana
35. Favorite place to eat? Near a fireplace.



As for nominating someone else, it's too hard to choose-so many wonderful blogs!

Thanks again for this lovely award.

Halloween Woes for Special Needs Parents: A Primer on How to Enjoy Halloween with your Special Needs Child

Dear Son, Age 3.5, Scarecrow

The Disabled Kid’s Keeper writes a blog post regarding dressing her special needs child up for Halloween at school. Apparently, a letter was sent home from school asking the parents to dress the kids up and then telling them that after the parade at school, they were going to take the special needs children to a local Senior Center, where they would have a parade for the seniors. It’s her child’s first year of school and she doesn’t feel like dressing the child up since she doesn’t think her kid knows what is going on. Second, is the issue of parading her child at the Senior Center so they could be “pitied”. She is disgruntled because the “regular” kids don’t get paraded at the Senior Center so why should her child?

Posts like this make me sad. I know all too well that these kids grow up really fast and if you don’t enjoy their time when they are young, you don’t get a second chance. Second, you know that I really enjoy dressing Dear Son up for Halloween so it makes me kind of sad to think that the Mom will be missing out on this as well. While I love seeing Dear Son all grown up, I really miss getting him dressed up for Halloween and dreaming up those costumes! As a matter of face, I loved creating the costumes so much, that I always thought that I would love to create costumes for Special Needs Kids at the hospital, so they could dress up and get their pictures taken to celebrate Halloween.
Dear Son, Age 1, at Grandma's as an M & M

But stepping back, I do understand where she is coming from and why she might feel that way. Perhaps the best analogy to illustrate my perspective is this…Many years ago when I worked full time, a consultant was brought in from Organization Development to work with our department. At the time, I was a Relationship Manager for a healthcare software vendor and my role was to establish and develop relationships with “C” level executives so that they would purchase our company’s products and services. As a result, it was important for us to understand everyone’s perspective at the different levels of the organization since my role was to understand not only the client’s strategic IS plan but I had to understand the political climate as well. To illustrate the importance of understanding others perspective, this consultant used the example of a mule pulling a wagon. There was one person in front on the wagon and several people sitting on the wagon, each facing a different direction. So let’s say the one person on the mule was facing north, the others were facing east and west and the one in back facing south. We were told to imagine what each of them might see based on their position on the wagon. So the one on the mule was looking forward and could see where they were going. The one on back, couldn’t see what was ahead but only where they’d been. The ones on the side, couldn’t see what was ahead or behind, only where they were currently at. That’s a lot like what the Disabled Kid’s Keeper is at…she can see only where she is now. Having been there, I can offer her a different perspective based on where I have been, to give her a different perspective. Notice I didn’t say her perspective is in any way wrong, because I feel each parent of a special needs child’s feelings are valid, I am just saying that there is a different way to look at the same situation.

So why should she dress her child up? What benefit will it have for the child? What is the benefit for the seniors at the Senior Center? I can’t speak for her but I can give her a different perspective, the one I had with Dear Son.

Dear Son, Age 4.5, Cat in the Hat

Dear Son started school when he was three years old. He had physical, occupational and speech therapy when he was around 18 months old, or maybe sooner. I really don’t remember. We sold our house and moved to a different state so he could get in at the Easter Seals and then start school when he was three years old. I remember how scary it was, putting him on the little yellow school bus, when he didn’t know a soul. I remember how I worried about what might happen to him and how he wouldn’t be able to defend himself. I certainly didn’t know much about the whole special education process so everything was not only new but seemed like a blur. Heck, keeping up with the medications, the therapies, caring for Dear Son, working part time, being married while Dad worked midnight so I could work the day shift, well, you get the idea; everything was difficult. Nothing we did seemed easy.

Dear Son, Age 5.5, Chef

I remember when Dear Son was little, that there were odd gaps, things that he didn’t piece together and things that I didn’t really understand. For example, we ducks that came up to feed outside of our patio doors (our yard backed up to the pond), and although they would come right up to the window and he’d be looking right at them, it was like he never even saw them. There were so many examples of things like this, that you never knew, what if anything, that he was processing. School tests weren’t much help either…there were many times it was difficult to measure Dear Son’s abilities because his physical deficits were so great (he had no use of his hands or arms, etc.) that they had trouble measuring his mental capacity. There was always that debate among the professionals…did he know what was going on or did he just not do the assigned task because it was too much work for him. As many questions as they had, I had some too. It could be downright scary to look too far into the future; it was the big, bad, unknown future and who knew what that might bring. Of course the feat of the future was always the same…would our kids do something that we couldn’t handle?

As difficult as the early years were, I remember exactly the age that everything came together for Dear Son. He was ten years old and it wasn’t until he went to a daycare center near our home that he finally began to spend 100% of the time in “our” world. Prior to that, I never really knew how much he understood, or what he could really process. The teachers and therapists would always stress repetition but as a mother, you wondered if they would ever “get it”. I was working full time and found a daycare center close to home that agreed to give Dear Son a try for one week. If at the end of the week, he was too much trouble, they would refuse to take him. It was only for two hours each day, from 3:30 p.m. to 5:30 p.m that he would be there, but still. After the first day, the owner said it would not be any problem and that he fit right in. (He was and is the only disabled child they ever took at that center.) He loved the kids there and all of the action. He’d have these big old belly laughs there or he’d get to sit in the dirt hole and play but whatever they did there, he had fun. That was the turning point when I think he preferred to spend more time in our world and eventually, none in his little world. But it took ten years.

But none of this would have happened, it he didn’t have all of the experiences all along. You never know what experience or what clicks for them and you have to give them all of these opportunities. It’s all part of the learning experience. I have always believed that for Dear Son, his education consisted of many parts-there was the school experience, his therapies outside of school, what he learned at home, etc. There is no one place for all of his learning to occur. Also, you can’t expect that the first time they do something new, that they are going to get it. It might take a couple of times before it all comes together. No big deal really. If you think about it, we do things that are new to us and we don’t always get it the same time. But everything doesn’t have to be about whether you get it or not…sometimes, it’s about getting out of the house and doing something new.

Second, you have to accept who they are but not let it define you or define them. Yes, Dear Son is special needs but we were determined to enjoy Halloween like everyone else! I made costumes for him, took pictures of him in his costumes and thoroughly enjoyed it. Now, I had to do things differently than other people but we still had a great experience. For example, I’d get Dear Son dressed up for Halloween and then I’d feel funny about taking him out Trick or Treating in the neighborhood. I’d purchase candy to give out to the neighborhood kids and Dear Son might sit near the door when I did that. After all, if he couldn’t eat the candy, what was the purpose of going Trick or Treating? But that’s not the point. You don’t go Trick or Treating to get candy for your kids. Heck, you can buy your kids their own candy. You go Trick or Treating because it’s fun to get the kids dressed up. It’s fun to see the other kids costumes. It’s fun as parents to see how beautiful, cute and sweet your kid is all dressed up. You take your kids to the door, not for the candy, but to hear the parents and people answering the door “ooh and ahh” over your kid’s sweet face and cute costume. You see your neighbor’s kids and your neighbors walking around the neighborhood and you all laugh and comment at how cute all the kids look. Basically, you just have fun! It’s these types of activities that bonds us as a community and as family. To not take your kid out on Halloween is missing out on the holiday for them AND for you! Having a disabled child does not mean the child should not be seen or heard! No, they should be taken out and enjoyed like all of the other children! Dear Son without his front tooth, Too cute!

Now then, while I did dress Dear Son up for Halloween, I didn’t always take him out in the early years. One year though, the weather cooperated and we went out. I felt odd taking a plastic pumpkin (aka Trick or Treat bag) up to these homes to get candy for him. He had a cute costume on that year as he was the “Cat in the Hat”. This was Dad’s favorite costume. Anyway, Dear Son had a communication device that he operated with his feet. I tied the communication device to his wheelchair footrests and programmed it to say, “Trick or Treat”. It was not only a lot of fun but it was great therapy to have Dear Son pressing that communication device over and over again with his foot. What great practice! Now timing, was another thing! I tried to have him wait until the people answered their doorbell but he’s start hitting the communication device with his foot as we walked up the driveway. And people just loved him! They’d see him and comment on his costume and give him ten times the amount of candy that they’d give the other kids. I’d have to explain that one was more than enough since he didn’t eat candy but they didn’t care. I had an awful lot of candy to give out at my house as a result of that! So my point is that you do this for you too! It’s all part of being part of a group, being part of a community and being part of life!
Dear Son, Age 10.5, Jack in the Box

Then, the whole thing got out of hand. Once I got into this Halloween costume making thing, a light bulb went off and I realized that I could use the wheelchair as a cool and awesome prop to make bigger and better Halloween costumes. One year he was a chef and the wheelchair tray held his bakery creations. One year he was the ‘Jack in the Box” and I built the box around his wheelchair. The only bad thing was that by the time I figured this out, he was getting too big to go Trick or Treating!

Now then, the other issue she raised was that she didn’t want her child “paraded” around the Senior Center when the regular kids were not. Yes, I understand where she is coming from however I hope when I am old and in a Senior Center, someone brings around the Special Needs Children for me. After having Dear Son, my heart and mind have been enlightened. Where I once struggled to see the beauty in these children, I see nothing but the beauty in them. Their hearts are pure, their struggles are so great and life doesn’t seem fair. I can’t help but get teary eyed when I see them because I wish things would be easier for them. I pray every night for all the special need children in the world as well as for their parents, their care takers and the doctors, nurses and medical people who care for them directly. I know it takes a village to raise these kids and no one can do it alone. But I can’t help but think of the joy in those seniors when they see these special children, dressed up in their cute little Halloween costumes. I see myself in these women someday. I see a day when seeing a special needs child all dressed up for Halloween will be the highlight of my day. And for that reason, I think she should dress up her child for Halloween. Don’t take away that special day from the seniors. They may not have much to look forward to and if they invite the school kids back every year, the seniors probably enjoy it.

And finally, sometimes we have to do things a little differently than other people, but that doesn’t mean the holidays can’t be as fun. Here are a few tips on celebrating Halloween with a special needs child:

• Start early. I’d decide early what he would be for Halloween. I usually preferred to make them since I thought they looked better. One requirement was that they had to be warm, since I didn’t want Dear Son to get cold.
• Have a dress rehearsal. I have cute pictures of Dear Son for Halloween but most weren’t taken on Halloween! I’d dress him up and take them a few days prior-that way I didn’t have the pressure of trying to get a great picture before the school bus drove up. I’d take a ton of pictures, hoping to get a few good ones.
• Have everything set up for picture taking (meaning the background or chairs or whatever) so when you are ready to take the pictures, you can work fast. Often, Dear Son couldn’t sit very long or he’d slobber so I had to take the pictures fast, before he’d tire out. Of course, now we have photo shop, so it’s much easier to erase drool from a shirt! And if they drool, so what! Do you think every family has perfect pictures except for you special needs child? Don’t expect you or your kids to be perfect. This isn’t a modeling shoot, it’s a fun, childhood experience!
• Learn to use the wheelchair as a prop for costumes. For example, if you have a boy, you can have your child be a soldier in a jeep, putting a box over the wheelchair and making a jeep. I wanted to do this for Dear Son, but he got too old! Of course, I’d take those pictures in the woods (We actually had a walking trail near our home that would have been perfect!) Or he could be a fireman in a fire truck-again using the box over the wheelchair and painting the box red. You could glue on a light, add a bell, put a wooden bed rail on the side of the firetruck as a ladder, or simply paint a ladder on the truck. You could add a dalmation or fire dog on the truck as well. For a girl, she could be Cinderella in her carriage. You can do the same thing, putting a box over the wheelchair and making it a carriage. The key is to find a picture of something you like, then re-creating it as best you can and elaborate or embellish it to stand out.
• Give yourself some time to make the costumes. If you are going to make a costume or let’s say a fire truck, as in the example above, start a week in advance. The hardest part is measuring the wheelchair and getting a box to fit over the wheelchair. Be sure to give yourself time to get the box. It took a week before we could find one for the “Jack in the Box” costume. The problem is that you need the box to be long enough to cover their legs the wide enough to go over the width of the wheelchair.
• Costumes that don’t work for special needs are the following: anything that is too fussy, anything with a mask or anything that is too stiff. For example, a tin solder is not a good idea for a special needs child. The kids can be floppy and it’s not the best choice. A better choice is a rag doll if they are floppy. Use your child’s body type and disabilities to “accent” the costumes. Use make up on their face instead of any mask. For example, when Dear Son was the chef, I purchased a moustache for him to wear thinking it would be funny. Well, it didn’t stay on so finally, I drew one on him with an eye pencil. He looked really cute and it was far better than the one I purchased.
• Costumes that do work for special needs kids are ones that match their body type or their disabilities. For example, when Dear Son was ten, he was fairly skinny. So that year, I made him a “Tin Man” costume from the Wizard of Oz. I made it out of poster board and aluminum foil. It was a great costume because he was so skinny. If he was husky, it wouldn’t have worked.
• Costumes for kids should do one of two things: Make you laugh (the creative ones). Make you smile (because the kids are so cute).

Dear Son, Age 8.5, Tin Man from the Wizard of Oz!

So in the end, it doesn’t really matter if your child is special needs or not, at least for Halloween. You might have to do things differently, but that doesn’t mean it can’t be any fun. And if there is anything I have learned from Dear Son, it’s that when I am having fun, he is too. And that’s the best reason of all to celebrate any day, let alone any holiday.

Make a Wish Trip!

Our Make a Wish trip itinerary arrived in the mail today! Yay! It won't be long now until we leave for Disney World! Only a few weeks away.



Our Make a Wish trip includes:

• Round trip limousine pick-up with a wheelchair van.
• Round trip tickets to Disney World for Dad, Mom and Dear Son.
• Lodging at the Give the Kids the World Resort.
• All medical equipment and supplies delivered to our room (hoyer lift, IV pole, diapers, wipes, bed pads, formula).
• Passes to the Animal Kingdom, Universal Studios, Islands of Adventure and Seaworld.
• Meeting with Barney! Dear Son loves him!
• Extra money for meals, souvenirs and travel.
  

We are going to start planning our days now with the various activities. Let me know if you have any other ideas. I printed off all of your comments previously so we'll plan from there. I've been keeping a file of things to do and things to take. While most people keep a travel list, I had lists created of, "Things to take to the Hospital" so this list will be a great starting point for our travel list. I expect to complete our travel list in the next week. It's been over ten years since Dear Son and I have had a vacation so I am really looking forward to this trip. Dear Son's life jacket arrived this week, courtesy of the Make a Wish Organization.

This will be his Dear Son's first trip on an airplane. It should be exciting!

A special thank you to our wish grantors, Angela and Laura for giving our family a trip to remember. We also need to thank our Make a Wish Coordinator, Courtney, for all of her help these past few weeks. Your hard work is greatly appreciated. We all look forward to some sun and fun.

Dear Son Medical Update

It's been a tough few days for Dear Son. As I mentioned, he had a bad seizure Thursday morning before school. After administering Diastat (a rectal Valium), the seizure stopped but he slept most of the day. He was awake for around two hours or so that evening, but that was it. He continued to have difficulty on Friday, Saturday and Sunday. First, he choked on his saliva a lot at night as the secretions are getting extremely difficult to manage. There seems to be a correlation between the increased seizure activity and the secretions; when seizures increase, secretions increase and therefore it's harder for him to manage. It's not only the swallowing that is difficult for him, but he is pretty weak and has trouble coughing. While the Diastat could have supressed the coughing, I really think the weakness in coughing is linked to increased deterioration.

In addition to the secretions, he has slept basically the entire time since Thursday. He opened his eyes briefly over the last few days but seemed to be having a lot of seizure activity. I did try moving him to the living room and putting him in the recliner however he never really woke up.

Today, he seems a little better. His eyes are open, he is coherent and while he is still sleeping somewhat, when he is awake, he is happy and is aware of what is going on. I spoke with the doctor on Friday and they increased his medication so maybe that is kicking in a bit. We are also trying a new extended release version of one of his seizure medications so hopefully that will help him a bit.

Tomorrow he returns to school. I am hoping that as long as he does well today, he should be able to go tomorrow. We follow up with the doctor later this month.

*Congratulations to Angela Doyle, one of our Make-A-Wish sponsors. She finished the Chicago Marathon yesterday; she ran it for Dear Son. She finished the race, along with several others from the Chicago Make-A-Wish Team, then flew back home. We appreciate her support.

Make a Wish Trip Update

A few of you have been asking for an update on our Make a Wish Trip to Disney where we will celebrate Dear Son's birthday. Up until now, I haven't had any information however earlier this week, the Make a Wish (MAW) coordinator called to give me a status update on our trip. Apparently, everything is in order and she'll send me the final itinerary at the end of this week or the beginning of next week, then we should be good to go.

During our call, we also discussed swimming for Dear Son. Since they didn't have life jackets at the Give the Kids the World Resort, they offered to purchase a life jacket for Dear Son and have it shipped to our house. I selected one with a zipper so that it would stay secure on Dear Son; I didn't want any issues like we had this summer in summer school. She was then able to order one like that for him and we'll receive it in the next few days.

She also ordered all of the medical supplies we'll need for the trip. At our initial meeting, the MAW people offered to order all of Dear Son's supplies, so we won't have to pack them in our suitcases. This is fantastic since the supplies would have taken up two large suitcases, let alone be over the weight limit. They have ordered all of his formula, diapers, wipes, changing pads for the bed along with a hoyer lift and IV pole. That way, we don't have to take any of that along. I hadn't even thought about that but since they offered, I let them do that. The only things we'll need to take for Dear Son are his wheelchair, feeding pump and all of his medications for the week.

In addition, they are trying to set up a "Meet and Greet" with Barney for Dear Son. He really loves Barney and I am sure for those of you without a special needs child, that may be hard to understand. Barney was Dear Son's favorite toy for many years. It was the only toy that he could activate himself. Dear Son never had use of his hands/arms, couldn't walk, couldn't sit up very well on his own and well, when you can't do that, there aren't many toys for you to play with. When Dear Son got Barney for his sixth birthday, he immediately took to him. He could activate Barney by biting on his hand and Barney would talk to him. He could also take his foot and press on Barney's foot and he would sing. There aren't a lot of toys for severely disabled children, like there are for regular children, so for that reason, Barney is very special. At the Pediatric Neurologist's office there is a poster of the Velveteen Rabbit with a phrase that says, "When you love something long enough, it becomes real." That would describe Dear Son's relationship with his beloved Barney.

We are also thankful for our wish grantors/sponsors. We have two women that are responsible for granting or sponsoring our wish. Over the past few months, I have become friends with one of them. Angela Doyle is one of our wish grantors and she has worked tirelessly over the past few months raising money not only for Dear Son's wish but for other children as well. She and her wish granting partner grant three to four wishes a year. They will be granting Dear Son's wish as well as a few other children this year.

Angela and I have becomes friends over these past few months. Recently, we got together for tea and taked about the Make a Wish Organization, among other things. I asked her how she got involved with this and what inspired her. She said that she was a childhood cancer survivor and that experience prompted her involvement with the MAW Organization. She said that, "Every child and every wish is unique, but all the children I've worked with have inspired me with their strength. It means so much to me to see the kids and families get excited and forget about their illness for awhile. So I've seen firsthand the kind of impact Make-A-Wish has on the families, and it motivated me to raise money to support the organization." Angela works tirelessly in her spare time to raise money for the MAW organization. Since I've known her, she has had garage sales, bake sales and will also be running the Chicago Marathon on Sunday to raise money for Dear Son and the other children she sponsors for the Make a Wish Organization. Her goal is to raise $3000 for these children. You can see her progress or make a donation to the Make a Wish Organization here under Angela Doyle. (Thanks to the employees of Dear Son's Dad company who donated to the Make a Wish as well.)

This year, we'll be watching her run the race on Sunday, as well as tracking her here. One of the cool things about the Chicago Marathon this year, is that you can sign up to track the runners. She has been training since March for the marathon and has logged over 500 miles in preparation for the race. She usually runs 5-7 miles three times a week with a longer run on the weekends. The weekend prior to our tea, she ran 22 miles.

One of the things I am most thankful for, is how easy they are making this for us. It is really hard sometimes doing things when you have a child with special needs because everything you do is a thousand times harder than it is to do with a normal child. It's hard too because sometimes, well, you just get tired. The MAW organization has gone out of their way to do everything possible to make it easy for us to travel and to take care of everything for us ahead of time.

As for Dear Son, he is starting to get excited about our trip. We'll be celebrating his 18th birthday down there so I'll talk to him about how everyone will sing Happy Birthday to him and clap and he gets a big smile on his face. He loves a crowd and being the center of attention.

Today however, he was unable to go to school. He had a bad seizure this morning and had to stay home. He slept until 5 p.m. and then I got him up for two hours before putting him back to bed for the night. The good news was that he didn't have a fever so at least he's not coming down with anything.

That's all the news for now. I'll update you when I get more information. Thank you for all of the lovely comments and e-mails about our trip.

Standing in the Checkout Lane of Life…

The school bus arrived home early, for the half day of school. It was only 1 p.m. now, and we were only through part of the day. I tried to visit a bit with the substitute bus aide, as I took Dear Son off the bus, but Dear Son wasn’t interested in idle chit chat between us, as a gentle rain began to come down. I rolled the wheelchair up the drive, into the garage and closed the door. I had hoped that once inside, I might get a little time to visit with Dear Son before he fell asleep for the night.

His days are shorter now. He falls asleep pretty much right after he gets off the school bus. I try to sit with him outside on the drive for a few minutes, on really nice days, to talk about what he did at school that day, but many times he falls asleep right there. If that weren’t enough, they tell me he has started taking more naps at school.

I take him inside and put him in the recliner in the living room, trying to avoid the inevitable. At least he’s not in his bed, I tell myself. Sitting up will be good for him. Within five minutes, however, he is fast asleep. I move the wheelchair past his rocker that sits at the table, the one he used to sit in after school just last year. It sits at the table, as a dull reminder of the good old days, never to be used again. But somehow, I can’t bring myself to put it away. That would be too final. I pass the rocker on my way to the recliner, taking a blanket to cover him up while raising the footrest up to make him more comfortable. He sleeps until 5 p.m.

I am concerned a bit, by the disease progression. By now, it’s not a surprise. It’s as if he’s in the check out line of life. As Dear Son stands in line, in his wheelchair, I keep grabbing his hand, trying to bring him back into the store. It’s as if, I keep pulling his hand, trying to get him to look over at me while telling him, “Remember this, as I grab a toy he might like…or remember when you used to like this…and then I would tell him something that he used to do, when he was a little boy.” I’d then get desperate and grab at just about anything, hoping to make him laugh, like he used to. All the while, it would be getting harder and harder to get him back into the store. The line would move forward, with the check out getting nearer and yet, I’d go around the store, trying to get Dear Son’s attention, to pull him back out of the line. In the early days, it was easy to distract him, when he was further out in line, but now, as he moves towards the front, he no longer wants to get out of that check out line, nor does he want to look back.

It’s hard too, just getting him to smile. Part of it, is maturity. They don’t laugh at seventeen as easily as they do when they are ten. And part of it, is that he’s just plain tired. I can see that it takes all of his energy, just to get through the day. Those days are short now. He sleeps from the time he gets home from school at 3:15 p.m. until the next day. He might wake up for five minutes around 5:30 or 6 p.m., just enough for me to start his supper through the feeding tube, then he’s back to sleep until the next meds are due around midnight. He’ll wake briefly, I’ll change his diaper, then he falls back to sleep. The only other time I hear him, is if he cries out from a seizure or chokes on his saliva. If that weren’t enough, he’s started to take naps at school. These aren’t medication related anymore, it’s just that he’s moving up, in the checkout line of life.

For that reason, everything is riding on the “Make a Wish” trip. Someone asked in the comments section the other day, how it was going, and that they wanted details. And for now, I don’t have them. We should be getting our itinerary any day now, and when we do, I’ll share it with you. But more than anything, I need Dear Son to enjoy this trip. I want to see him laugh, as in really big belly laughs. I want to see him smile. I want the days to be so much fun that he doesn’t want to sleep all day. I need that for me, as much as for him. I need and want to be able to look back and remember that smile, the one that would light up a room. I need to remember the belly laughs and how his head would fall forward from the belly laugh, because he couldn’t laugh and hold his head up at the same time. I want to remember the pretty girls, the ones he stares at and tries to get their attention. I want to remember the sun on his face, as I hold him in the pool, him with his eyes closed, in a deep state of relaxation in the swimming pool, like he loves to do. I want to remember all of that. I want it to be the best. The Make a Wish trip is like the giant blue light special in the store of life, where I pull Dear Son out of that check out line, and bring him back into our world, even if it’s for just a little while. And the 18th birthday, well, it will be the time of his life, or so I hope.

But today, I’ve watched him sleep in the chair. I’ve moved him into the bedroom and tucked him into his bed. I’ve changed his diapers, fed him, gave him his medications, hugged him and kissed the stubble on his cheek. I gave him everything I have, because I love him and so I won’t have any regrets. But somehow it’s not enough. I need to pull him back, pull him back into our world for a little while longer, so I can hear his laughter for a little while longer. But tonight, it’s not going to happen. No tonight, I just hear the rain.

Note: Dear Son has a progressive neurological disease and suffers from seizures, dystonia and severe mental retardation due to a random mutation of the ARX gene.