Category Archives: Bumbum

Monday Blues

My family goes into a huge denial on Monday mornings. First we love to think that we can sleep it away. When that doesn’t work, we try various
strategies. Last many years I have drafted many emails in my head requesting a day of absence from my boss for many obnoxious reasons. The fact that I still have my job is because I never really sent those across. Most Monday mornings, D just sits and stares really hard at the computer, and I think he imagines that the staring might just burn the machine and he can use that as an excuse. Anyways, this post is not about our failed attempt at wishing Monday away, but about BB and his words of wisdom(S). He wakes up today morning, comes to me with the cutest possible face and simply hugs me to say the following….

“Mamma, today only Junior goes to school and BB stays with Mamma” .,.. He topped it off with a huge kiss and a very tight hug.

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The Art of Speaking

Last weekend I went out with my gal-pal for a quiet
dinner and drinks date. She is a mommy of a busy 2 and half year old boy. Like
all mommies we started talking about our kids and she mentioned how her Baby O has been diagnosed with speech delay and started the Early Intervention Program.

The whole episode set me thinking about how common speech delay has become, particularly in boys. We are a bunch of 4 girls who hang out together and 3 of us have kids with speech delay. I know few other kids around who have it and all of them are boys. I am not sure if there is a reason why this has become so common. Life is changing, lifestyles are changing, and there might be something which is causing this. All of the moms I have mentioned above (Except Baby O’s mom and me) are SAHM and they are extremely hands on with their kids. The kind of effort these girls put in to make their kids talk is enormous. These kids
spend time at playschools interacting with other kids and they get a lot of attention from the teachers. All of them have been enrolled in the Early Intervention program.

Whatever be the reason, it is extremely tough for a parent to deal with such situations. All kids in Bumbum and Junior’s class talk and have big stories to tell! I know that we should never compare two kids, but then when their frineds run up to me telling me what my boys did during the day at school  and my boys can just manage to tell me parts of the happening, it IS difficult for
me to think rationally. That being said; my boys are really trying extremely hard. For the tiny 3 year olds the efforts that I see them put in is enormous. They went through a rigorous early intervention program at home and school. They had DI, Speech and Occupational Therapy for almost a year. I see the fruits of it now. Bumbum won’t stop until he has made one correct sentence to explain whatever he wants to tell me. Just a couple of months back he barely had 50 words. When I work with him
he completely cooperates. He wants to learn and that is my biggest strength.

There are days when I get tired and I give up; then I hear them try and tell stories in their own little way. Just the other day he told me the story of Goldilocks. He told me that there are bears.. count .. one bear, two bear, three bear, mama bear.. baby bear… They walk ..Goddilucks enter… hot soup ..do foo foo (like we blow into hot food 🙂 ).. chair breaks .. Goldilocks sleepy sleepy … All this while his eyes danced, his fingers pointed and his hands spoke .. he told me the best story I have ever heard with his whole body and soul.

I guess the biggest thing to help children with delays or disabilities is to be consistent, to get as much information and help as you can from the experts. In the US there is the option of getting the Early Intervention Program. Lot of
Indians attach a stigma to it, I would really encourage everyone to avail as much help as they can get. And while the therapists do their thing with the kids, the most important thing for any parent is to be on top of things. Our initial
experience with EI was not that great and the therapist spent a lot of time doing useless stuff or chatting with me. It took me time to realize what was going on and then I was not sure what I should be doing. I had no one to refer
or ask. But then I decided to speak up and I realized that how co-operative the administration can be. We got a change of team and I could have never asked for a better set of people. They worked hard training the boys and us on what should be done, and we saw results slowly. The improvement was very gradual. The boys are quite vocal now with their- “I need”-s and “I want”-s. They
speak only in English though. We can live with that 🙂

Like I keep saying .. Slowly we are getting there …

Day 3 Post-Op

Sat: Dec 05 ’09  

Today it was me who was not feeling quite well. 4 sleepless nights usually does that. I woke up with a bad head ache. Bumbum needed some pain medications last night and he kept waking up every 3 hours. Then after the medications we needed to pat him back to sleep and just stay attentive so that he would not start scratching his eyes. He has started looking better right after they took the bandage off. The stitches on his head are almost invisible and with the swelling going down it’s looking better. Dr. Staffenberg really did an awesome job. I will post some pre and post surgery pictures of Bumbum after we get home. His head is round and nice now and there is no visible scar from the surgery. And today is just the third day post-op. Three years down the lane I think it would be hard to tell that Bumbum ever had any surgery done. Since they did not shave his hair off, whatever swelling he has on the head is not really visible. But these are really not the highlight of the day. The best part of today was when the nurses took all the IV lines off him and we could hold Bumbum. He immediately relaxed. We felt so much better after we got to hold him. And then when I stepped out with a smile on my face to meet Junior I felt the first snow of the season fall on my head. It was such a beautiful day. I walked in the snow to the apartment and Junior was right there waiting to play with me. Last few days I have been writing about Bumbum because he has been struggling here, but Junior my hero has been putting up an extremely brave front too. The baby who has never liked been fed or handled by anyone else but me has been so mature about this whole thing, that honestly I am surprised. He has been calm with my mom, taking all the feeds from her well. Junior has weight gain issues, so we are over sensitive about his food. What he eats, how much he eats, duration everything. So I was worried about him when we came here. But he has been behaving very well 🙂 Slowly we are getting out of this situation and I am so proud of all the men.

D has been a super strong dad. He is a great father anyways. He has stayed up at nights with the boys, changed diapers, given bath, cooked for them and all of these on an everyday basis for the last year and a half. So I did expect him to be staying up and sitting by Bumbum’s bed side may be more than I do, which he did. That’s what makes him such a great dad.

Day 2 Post-Op

Today has been better. Several things worked out as we wanted them to. The doctors and the nurse managers came and assured me about the pain management issues we had last night. They were really helpful and they understood our concerns. So now I am sure they would be no confusion about the pain medication. But on the other hand, Bumbum did not need any morphine for the last 36 hours. So I am sure he won’t need any going ahead. This is usually expected by the time the babies are on Day 2. The first 48 hours are anyways the worst. I wish he got the much needed dose last night; we could have saved him from some pain. But well, everything is in the past now and after talking to the doctors and the nurse managers today, I am sure that it was just one person who was wrong. I will not blame this incidence on the whole institution. I guess if this happens again today I am just going to page the surgeon who did Bumbum’s surgery and he will take the final call. I should have done it yesterday. He is anyways just a phone call or email away. But well, we all learn with such situations.

Best part of the day (and I missed it) was when Bumbum’s bandage came off. I usually spend post breakfast time with Junior at the apartment we rented out here. He needs his own mommy time too. So while I was playing peek-a-boo with my li’l munchkin I got this phone call from D saying that they are taking the dressing off. I was nervous to know how his head looked. D assured me that it looked awesome and he sounded so excited over the phone. It has been a long time I did not hear that excitement in his tone. I knew even on the phone how happy he was. I knew and had complete trust on Dr. Staffenberg. I had come this far just trusting that he would be the best surgeon to do this surgery for Bumbum. We had our confusions about whether or not the surgery is a necessity, but there was one thing we knew for sure, if we are having the surgery Dr. S would do it. I wish he could be a visiting doctor to NJ though.

Bumbum has slept well most of the day today. His eyes are still puffed up and he cannot open them but the swelling is going down and I think we should be able to see some significant progress tomorrow. Fingers crossed.

Day 1 Post-Op

Yesterday was Day 1 post op. It was tough. Tough is a small word to explain what D and I are going through here on a daily basis. The fear, the anxiety, the fact that Bumbum is lying there all swollen and puffed up unable to open his eyes, the fact that the staff is although knowledgeable is not compassionate around a family whose baby just had surgery. Sometimes compassion makes a huge difference, especially if people are going through a situation like ours.

Coming back to 24 hours post op, the good thing was that he was moved from the ICU to the regular ward. He did have a uneventful morning, he pretty much slept through it all. The medications were given on time, but he refused the bottle so he was still on the IV fluids. All the monitors came off yesterday so he slept calmly through the night.

After moving from the ICU to the regular ward, what surprised me was the fact that Bumbum an ex preemie was in a place where there are RSV and flu patients. The fact that he had a major surgery and would be more prone to catching a bug, should have been also taken into consideration. His roommate here was coughing quite badly when we came into this room. I had to stand up for Bumbum and I started asking people on the floor if there was an option of him being alone in a room or to keep him in some place where he would be less exposed to a bug, may be share a room with someone who did not have any respiratory issues but was like Bumbum a surgery patient or something similar. I got all sorts of answers which pretty much summed up to say that “We know what we are doing so please just mind your own business”. I had it enough with the corporate lingo; I was one of them till a year back so I know very well how this thing works. I knew I was just being hushed up with sugar coated words. Anyways I know for a fact that Bumbum’s ex-preemie status and the fact that he has just had a major surgery added up to the risk of him catching anything in the air and he should not be sharing room with anyone who is coughing so hard. May be the person just had allergies and would not harm Bumbum in anyway, but I had to make sure that everyone knew that he was an Ex-preemie and since it is the RSV season, that they are a little more careful.

But I guess the fact that I made it a point to talk to senior authorities and reached out to senior doctors who understood my concerns and agreed, things started moving and eventually people came and told me that they are making sure that he is not exposed to anything that might cause a risk to his health. The coughing neighbor was scheduled for discharge and we have a confirmation that no one with respiratory issues or any kind of infection will be put in this room. Thank God! One thing less to worry about.

I do not know if it was mere coincidence but Bumbum started wheezing a couple of hours after his entry to the regular ward. We all waited to see if it got worse and prayed that it would just stay just a sound. But it did not and it just became more and more audible. Thankfully the Albuterol that was administered worked and then combined with some Pedialite, it calmed the heavy breathing.

He was waking up during the night specially around the time the pain medication effect started wearing off. But after the albuterol, he pretty much needed just the pain meds. The sound could have been from the intubation during the surgery, but I think there is no way to find out for sure.

I am hoping for an uneventful day today. Just hoping he sleeps through the night, gets his pain medications on time and just heals as soon as he can so that we can just get out of here and he can be where he belongs, at home.