What I did last summer

This summer has been full of activities, birthday parties and fun. Here are some of the highlights.


Oh no, it's not over

Cousin Alex's Birthday Party / 4th of July
Each week, Sofia has been rejoining her Crocodiles class on a fieldtrip including Tracy Aviary, the fountains at the Gateway, Discovery Gateway and Red Butte Gardens. The the last fieldtrip was last week. She's always excited to go but once we arrive she takes varying degrees of time to warm up to her old school mates and teachers. At the Tracy Aviary she didn't want to be part of the group until it was time for them to leave at which point she insisted on going with them and was not at all happy to have to stay behind with me.


The fountains at the Gateway was a different story though. She jumped right in to the activity without hesitation. She played with her girl friend Hannah, who she sometimes gives the cold shoulder to and she shared her towel with her old flame Devin. She was not upset to see them go as she enjoyed her bento lunch on a bench.


With my new philosophy of less work and more play. We even got a kayak and a new car to carry it. We've been going to American Fork Canyon and Sofia is now ready for the outdoors with her new Chacos and lightweight rain jacket which proved very useful at Red Butte gardens where it was sprinkling most of the time we were there.

Preschool Drop-out

Last Monday, June 30th, was Sofia's official last day of daycare/preschool. I think I was more apprehensive about Sofia's transition than she was. I knew she would be happier at home with me of course but I thought she might have a hard time with the transition and leaving her friends. Apparently I was mistaken. She's really enjoyed being at home with me, having quiet couch potato days, outdoor swim days, shopping days, and even a back to school field trip day like yesterday at the Museum of Natural History.


Her friend Devin was probably the saddest to see her go. Sofia responded with typical indifference (yes, this genetic trait passed fully unmutated from father to daughter). She saved her emotions for a more appropriate time such as when she's deeply insulted by being given the wrong color sippy cup.


Sofia is really enjoying spending more free play time with Marcelo and I think this will make a world of difference giving them an opportunity to bond more with each other. She loves doing pretend play for hours, as well as a new interest in TV, and a renewed interest in swimming tirelessly. We've had some make-up gym classes and going more frequently has helped her social issues in class. She's enjoying class more and now acts like a monkey hanging off counters and climbing things everywhere we go. In the fall, I think we'll make a more concerted effort in more preschool activities again. So glad to be home.

Post surgery update

Sofia has done quite well after her surgery. She didn't complain of any pain and she had no problems adjusting to being a couch potato. I was really sick after her surgery so we spent a lot of time watching movies. She didn't mind.

Sofia received many well wishes
2 days post surgery
1 week post surgery

This kite kit from Kiri arrived in the mail on the second day home. Sofia got started on it right away.

1 month post surgery
Sofia's "bump" turned out to be caused by the atypical micobacterial infection after all. We went back for a post surgery checkup about a week ago and we have another checkup at the end of the month. We are watching to see that the red/purplish color clears from the skin that was on top of the bump. The doctor worked hard to save that skin and prevent a large scar but now it's a possibility there could be infected material in the skin as well and Sofia would have to be put on the heavy duty long-term antibiotics we opted to avoid by doing the surgery. Hopefully it will clear up and we will be done with this malicious "bump".

Parotidectomy

Sofia's surgery went well and there were no complications. It appears that the mass that was removed was a branchial cleft cyst. To summarize Sofia's surgery experience: pre-op, best case scenario, post-op, worst case scenario.

Sofia was not able to eat anything past midnight on the night before her surgery and could only drink clear liquids up to 11am the day of her surgery. She was scheduled for surgery at 2:00pm and we were to check in at 12:30pm. We were worried Sofia would be upset over not being able to eat. Ray and I didn't have breakfast to make it easier on her if she should ask for food. She drank apple juice in her sippy cup and never had asked to eat. We were surprised, releaved and happy that it wasn't a problem for her. At 11:30 we left for Salt Lake, Ray realized we forgot her sippy cup and we turned around to get it only to realize as she was drinking it that we were past the drinking cut off time. Ray started having a coronary. I distracted Sofia with a coloring activity, she asked me to hold her cup, danger averted.


We spent a lot of time waiting before even getting started with the preliminary exam. Sofia played in the waiting room and was in muted but very good spirits. Later, they took her vitals and she got changed into hospital pajamas. They are no more attractive for children than they are for adults. We went to the next waiting area but spent almost all of our time playing outside in the hall with the wagons and plastic cars. A child life specialist found Sofia in the hall and came to play with her one-on-one with all her medical equipment. This is definitely the kind of attention/play Sofia thrives on the most.


Sofia never complained about being hungry and never asked for food or a drink. Our surgery was delayed and we were not called until close to 4:00pm. We spoke briefly with the doctor and the anesthesiologist. Sofia was polite with them just as I had asked her to. Finally she was taken in a wagon to the operating room as the child life specialist blew bubbles all around her and promised her to play with flashlights once they were in the room. She was enjoying herself quite a bit. I was surprised at how well she remembered the routine of activities that would occur as she did not act surprised by any of it when it was time to transition from one thing to the next. When we could no longer accompany her. I asked her for a hug. She was affectionate and happily told us we could get in our car and drive home. Although this was the best case scenario, I was troubled as I thought about the huge let down it would be when she woke up from surgery.

The surgery was scheduled to take three hours. It went a little bit over. It was a very long day for us as we had not eaten or drank anything all day and it seemed to affect us more than it had Sofia. I was anxious to be able to be in the recovery room before she woke up because although I was trying to be positive I was picturing her coming out of the anesthesia in a similar way to when she has had night terrors and I knew it would be hard.

She was supposed to have one nurse assigned to her in the recovery area and only one parent would be allowed to go. When they finally called us to see her, I asked if Ray and I could both go, they said yes. When we arrived, four people were restraining her on the bed and she yelled and kicked. Her hair was all matted and tangle up around her head. She popped the bottle connected to the drainage tube and blood spilled all over the bed. She was screaming to that her hand hurt and she wanted the IV out. The more she complained, the more they tried to restrain her. They attached her hand to a board and wrapped it around her. This only made things worse. Seeing us was no consolation as she was so disoriented. As she struggled, they decided to transport her to her room. Ray sat on the bed and held her. She continued struggling all the way there, bending her fingers into the board and making things worse. I tried to fix it to no avail.

Once we got to the room, the post-op nurse took over. She wanted to give her morphine to settle her down and prevent her from struggling with everything attached to her. But Sofia had pulled out the IV and it had to be removed. Once it was removed, she immediately began to settle down. No more kicking and screaming. She truly was relieved. I was glad there was a real physical solution to her reaction. The nurse tried to discuss with me other locations to reinsert the IV. I told her it didn't matter and that I was fairly certain her bewildered behaviour would resume all over again and that it would go on for hours. She said we could wait a little before putting it in.

Sofia started drinking juice, popsicles and cheese. She was very emotional, particular and difficult but she was calmer. Her answer to all our questions was a consistent "No!". We put a movie in to try to distract her. Soon, she started falling asleep. She was fighting it but started drifting off. At that point it was clear that she didn't physically need morphine for pain and I asked if we could forgo the IV. The doctor on call said no. The nurse nicely said she would wait to put it back in. When the issue arose again. I decided to refuse the IV. The doctor relented and it was the right decision. Sofia went to sleep around 11:00pm and slept well until 6:30am. We gave her oral pain relief and antibiotics which I promised the nurse she would take well. The first dose took some prying but Sofia was great at taking all the rest. The nurse was super accommodating and only took her vitals a couple of times during the night instead of every 30 minutes. This really helped as it was struggle just to get the oxygen monitor back on her toe. Even her id bracelet had to be cut off as she complained that it was hurting her.


Sofia woke up in very good spirits the next morning. She wanted her blood pressure taken on all her limbs, nothing like the night before. We spent our time playing in the room, walking the floor, watching movies and eating.

Sofia remembered there was a toy room and requested to go first thing in the morning. She made friends with a little boy playing bowling. She invited him to come with her to get a slushy. It was so very cute.


At times, Sofia would get a little princess like having quickly figured out that everyone there was trying to cater to her every whim. At times, she wanted to go home. I think only when she thought about the medical things. But mostly she was an excellent patient the second day.


Today we are at home monitoring her drain to see if we can have it removed soon.

Pre-surgery preparations

Yesterday, Sofia attended a pre-surgery orientation at Primary Children's Hospital. It went as well as can be expected. She refused to wear her name tag and required a lot of coaxing just to get her in the orientation room. She wanted to ride one of the wagons parked outside instead. She finally agreed to let me put her name tag on her leg. My small feeling of success was shattered when she let out a screeching cry five minutes later while the nurse was talking to the group. Sofia, of course, was trying to peel it off and apparently the hospital uses name stickers with super-glue.

After a video about what to expect during surgery, we were divided into a parents' and a children's group. Ray joined Sofia in the children's group just on the other side of the room. She didn't want to sit on the floor with the kids so she sat on a chair with her daddy. The nurse went over everything that would happen again before and after the surgery. She gave the children each a doll and some medical instruments to play doctor with. Sofia, of course wanted two dolls and demanded the one in the blue gown. She threw a little fit when she got one in the aqua gown. She also tried to steal another boy's doll several times. She kept just having these mini fits and acting a little bit more --what would you call it ... non-compliant than we are used to, at least as far as her public behavior. I think she was tired, nervous and emotional about the whole situation which is still difficult for her to process. After this, we went on a tour of the areas she would spend time in. She was pretty well behaved during this part but made sure to mitigate her interest with displays of disinterest here and there for the record.

On the way home, I tried to see if she wanted to talk about the surgery. I told her that the surgery was for the doctor to take out her "bump". She said, "but they'll poke it". She also told me she didn't think they should take it out because it was dirty. Dirty like ... poopoo. I think maybe she thought that might be a good deterrent to keep them from touching her.

Later that evening, I encouraged her to play doctor with the all the stuff she got at the hospital. She was very interested in doing this in the safety of her own home. At one point, she covered the entire doll with the blanket. I told her we couldn't cover her face because then she wouldn't be able to see or breath. "But she doesn't have any eyes, mommy. She's just pretend". Seeing as Sofia's advanced intellect required more realism than the faceless doll, I volunteered Ray to be her patient. She quickly put on her doctor apparel and grabbed her insect collector tweezers.

Gymnastics

Last Saturday, Sofia's Little Gym class showed off all the skills they've learned. Sofia participated ... sort of, in her own way that she does.

"Dude, there's some hot mamas here.
Man, I wish they hadn't dressed me in this dorky pajama."

Sofia's routine took a bit longer than the other's since "panda" had to perform everything first.

Sofia has only been to a handful of classes and most of the time she acts like she's too important to actually pay attention to what you're supposed to be doing. So I was quite surprised that she was able to do most of the tasks, albeit on her own time table and with sporadic movements and noises in between just to keep us on our toes.

Ta-Da!

Unfortunately, Sofia didn't accept her medal as gracefully as she should have. She decided to shoo it away as it was presented to her. But I have to give her credit for her ability to very astutely gauge the quality of her behavior. When the class was over she asked if she could have a half ice cream.

One step forward, two steps back?

Sofia had a rough start with little gym class, falling in with the rest of the group, submitting to authority, following the rules, etc. But she quickly improved with the promise of a new blue tutu, then ice cream, and then regressed again on her last class. Why? I don't know, probably just to remind me who's in control of the misery factor in our lives. This picture was from one of her best days in class. She still does not want to make contact with the other kids if she doesn't have to. So here you can see how she uses "panda" (a mouse dressed up as a duck) as a buffer in this conga line thing they are doing.


I would like to think that these kinds of difficulties are a stage or a result of some temporary collection of factors currently present in her life. And, that maybe the right kind of activities and attention will help mitigate these issues and help steer her back in the right direction. But, as Sofia gets older and establishes her footprint on this world, I realize that this may be -- just who she is. Maybe I'm the one that needs some special activities and attention to help me get used to the idea that only more of this is coming. Because if she doesn't want to join the group now and wait in line to do a somersault as her teacher told her to, then she sure as hell isn't going to want to do anything any one tells her to do when she's 16. I'm bracing myself.

Bumps and Lumps

Sofia is generally covered with a wide array of bumps, bruises, and unidentified owies on her body at all times. She has a nack for falling and even more for bonking heads. I think she could probably make it an olympic sport, bonking heads, yes. Just last week, she ran into Marcelo's room, turned around much to abruptly and slammed her face in the corner of the door frame right across her right eye. Only an hour later, she had a head-on collision with another little girl at daycare when we dropped her off. And so on, and so on.

Anyway, a few weeks ago, while trying to tame back her crazy hair, I brushed my hand up against the side of her face and felt a peculiar bump right in front of her ear. It perplexed me, no, not that there was a bump on her face, but that it didn't have the familiar blue-purple colors that normally accompany these bumps. The skin was completely normal and the bump was much too large not to be associated with a bruise, so it concerned me. The doctor physician's assistant at our after hours pediatrician's office said it was likely an infected lymph node and prescribed antibiotics. The lump decreased slightly in size but didn't go away. So, I decided to take her to the ENT (Ear-Nose-Throat doctor) doctor that put her ear tubes in, as this side of her face coincides with the ear tube that has fallen out and I wondered if there was a small unlikely chance it was related.

Dr Heras, the ENT really had no idea what it was, she prescribed more antibiotics only because the lump appeared to show signs of decreasing with the first round, but she let me know that if it didn't go down in 8 weeks, we would probably need to go to Primary Children's because the lump goes over a critical facial nerve and she wouldn't be able to biopsy it herself. The second round of antibiotics showed no improvement at all, in fact, the lump although now smaller and softer, started turning pink under the skin and is now quite red and the skin has started thining out. I didn't want to wait seven more weeks to confirm the obvious but I wanted Sofia's regular pediatrician's opinion on it too. Dr Arnold also didn't know what it was but agreed there was no need to wait any longer and referred us to the Primary Children's ENT department with yet one more prescription of antibiotics for good measure --omnicef, this time.

So yesterday, we saw Dr Grimmer at Primary Children's. After a brief examination, he quickly concluded it was quite likely an atypical micobacterial infection of the parotid gland. An infection that does not respond to typical antibiotics and can be treated with a 3-6 month course of heavy duty antibiotics with 60% success rate or surgery with 95% success rate. Unfortunately there is no test that will confirm that this is exactly what the lump is so we were sent off to get a CT scan, bloodwork and a TB screen to make sure there were no other affected nodes and to help confirm this diagnosis. We were to meet back at his office after the tests to further discuss the issue.

The whole thing took about three hours. The one-stop-shopping aspect of Primary Children's is nice. We were able to get everything done in one day rather than going to multiple places, making appointments, and waiting for results. I just don't want to think about the bill because IHC is not a preferred provider for our insurance that we pay a small fortune for each pay check. Also, coordination between the departments sucked. I mean, it should have been better otherwise what's the point of having them all together.

We were told to go to the CT scan first but I didn't know the CT scan would require contrast and Sofia would need an IV line until we got there. I also failed to consider, as I was told upon arrival, that we would need to reschedule for a CT with sedation if she was not able to lay still. LAY STILL?! Of course, she can't lay still. She has never laid still in her life, including her unborn life from the moment the her cells started dividing. How many times have I said I thought she was possessed in the womb, and if she could lay still for a moment or two she might not have so many bumps on her head. I braced myself for the worst outcome almost feeling guilty that I would put her through this knowing and not divulging the truth, that it would be unnatural and impossible for her to lay still. The nurse that put the IV in her hand was amazingly great. I say this because everyone else there sucked compared to her. She talked to Sofia in a sweet caring voice, she was not taken aback by Sofia's unfriendly, I-would-rather-start-a-fire-in-your-house-than-say-hello-to-you attitude. The nurse had her sit on Ray's lap tummy to tummy and told her to hug him tight. She explained that she was going to put a straw in her vein and told her every thing she would feel so she would not be scared. Sofia did great and complained just a little when the needle went in. She got the first of many gifts, a doctor bear, for getting through it.


Sofia gave all the signs that she would cooperate beautifully and lay still as they positioned her for the CAT scan. I warned the technician that she should not be so confident because Sofia could flip a switch on that at any moment. She laid still during the no contrast scan. But when they injected the dyes into her IV and told her to lay still again she decided that was enough of that and immediately demanded to get out of her restraints. The tech frantically threw on her lead apron and ran in the room to operate the machine directly. She had to pull out all her tricks, look at the TV, snapping fingers, animal flashlight, etc. I was cringing at the thought of having to leave and come back to do it all over again another day with sedation. I saw the tech slap herself in the forehead in frustration only once but somehow Sofia was able to do it and they got the second scan. What a relief.

I was happy that went fairly well, Sofia got another prize, a bouncy ball. Why people? Why would you give a small child a sticky bouncy ball in a hospital! With success and confidence, we were headed to the blood lab as the CT tech informed us, that the IV would not work for them to draw the blood and they would have to poke her again. Had they coordinated their efforts, we should have been sent to the blood lab first and then to the CT scan. That upset me. She said there was a small chance they could reuse the IV line so she left it in. I think she didn't want to upset me further as there was a small unspoken incident at the end of the procedure that I think she was hoping I hadn't noticed. When we got to the blood lab, there was an issue over the fact that we had no green ID bracelet and Sofia's name was spelled wrong in the registration system. We headed to the registration office to fix this and to the report the incident at the CT lab. A patient relations person came down to meet us and then stuck to us like a fly. At first it was annoying as she followed us into the 4x6 foot room where they were about to draw Sofia's blood. It was a caravan of people, baby, bags, and bundle of Sofia's prizes in a very small area.

I told the tech there how annoyed I was that no one coordinated the whole IV thing and that I didn't want her poked again. He said the dye injection for the CT scan usually fries the vein making it no good for drawing blood but he was very nice and he tried anyway. Lucky for us again, in the 100 to 1 odds as he told me, it worked. He held up a baby doll and bottle of bubbles to Sofia and asked her which one she wanted. Obviously, this guy could never stand up to a battle of wits with Sofia. She answered, "both ... I want both", duh. Things were going very well and I never expect that things will, so I was quiet happy again but not for long. Another tech came in to do the tuberculosis screen. The tuberculosis screen was not to look for TB, but to further confirm the initial diagnosis which apparently shows up positive for TB 50% of the time. This tech, however was an absolute, well you know, not very smart person. She somehow managed to give her the control for the screen and not the actual TB part and then didn't know what to do. She wanted to have us go ask the doctor what he wanted and started blaming the other guy for laying the stuff out for her . And I guess it was his fault too that she didn't look at what the hell it was she was injecting into my daughter. Why are these people allowed to work in the medical field, why. Anyway, this is were the patient relations lady really came in handy. She took over the matter and cleared up the confusion. She offered to take the materials for the rest of the test and administer it herself (she was also a nurse) at Dr Grimmer's office being that we needed to go back there at the end of all this testing anyway. It was great, like having your own personal assistant to deal with the bureaucracy, inefficiency and stupidity of people. I wish she could go with me everywhere. I no longer had to wait in line or talk to anyone. It was like being in VIP status. I guess you are a VIP when you witness an "incident" in their hospital. Must remember to always witness a potential incident when you are at a hospital.

We didn't wait too long to see Dr Grimmer, we got our own little waiting room where Sofia was able to bounce her bouncy ball all over the place without it going into other peoples diaper bags. After reviewing the CT scan, the doctor said the lump had a tail going back towards her ear canal. There was also another possible diagnosis, Branchial Cleft Cyst, a mass resulting from incomplete involution of the branchial apparatus or possibly from ectopic epithelial cells growing along the course of branchial clefts. Regardless, it needs to be removed surgically. He asked if we wanted to think about it before scheduling the surgery but we went ahead and scheduled it right then. What's there to think about, if it has to be done, it has to be done. He will have to make a cut similar to the cut that would be made for a face lift, dissect out the facial nerve, and commence to remove the material. A bit nerve wracking to say the least. She is scheduled for surgery next month. It will require an overnight stay.

I hate that Sofia has to go through this and the potential risk to damaging the facial nerve, but I can only think, at least it's not something much worse.

Oh, another funny tidbit about Sofia -- when the patient relations nurse injected her with the TB screen, Sofia did not respond as well as she had with the initial poke earlier. She's a quick learner and she cried out immediately. The nurse, with her keen patient relations skills, reacted quickly and asked her if she wanted to give the baby doll a shot. Sofia stopped the screeching cry immediately. An offer to poke someone else with a needle? hell yes! You should have seen the look on her face. The nurse put the cap on the needle and handed Sofia the empty syringe. Sofia immediately went for the cap to take it off. If she was going to poke the baby, she sure wasn't going to do it with the protective cover. For a split second I almost thought we might have another incident on our hands but really I was very impressed and relieved that the nurse handled her reaction so well. I think this is a technique I may very well be able to use in other situations, so I need to stock myself up with syringes. I think I may finally have an effective tool to stop whining and crying in its tracks. Just don't be alarmed if Sofia tries to give you an injection next time you see her.

Spring Wardrobe... you be the judge

Dressed by Dada....



Dressed by Mami....

Story Time

Ever since I can remember (which is obviously not to long) we have been reading books to Sofia before bed time. When she was a baby, it really didn't feel natural to me to read to someone who had no idea what I was talking about and was not likely to comprehend any of it any time soon. Ray, I think probably enjoyed it even less seeing as he is not too keen on the whole reading thing. But we did it religiously every night sitting in our big PB Dream Rocking chair. As Sofia got bigger, I don't know if it was so much in physical size as in ego size. She no longer wanted to sit on my lap while I read. She would make her own space next to me on the rocker and would often complain that I was in her space. Through elbows to the ribs and heels to the thigh, we managed for every bed time story until Marcelo came along when we moved the rocking chair to his room. We replaced it with "Pepe", the PB stuffed animal seat (good finds at Downeast) and created Sofia a cute little reading nook of her own. We had to start sitting on the floor to read stories as she sat in her little "Pepe" throne to listen. Sometimes if I was lucky she would allow me to be a seat for her and she would sit on my cross legs with book in front of her. I welcomed her generous gift of human touch but it sure sucked for my back.


As Marcelo emerged out of newborness, I started wanting to read to both of them at the same time and my back really wanted to sit on the rocking chair but there was no way on the planet all three of us could sit in there and read a book so Sofia would sometimes have to sit on the floor. I couldn't stand the site of her sitting on the floor while me and Marcelo sat comfortably on the chair reading the story as though she had been stepped down to a peasant. Story time is our only time to really spend time together and be close each day so I went on a search for a modern rocking chair that would fit all three of us. Luckily the stars were aligned in my favor for once and the previously unattainable Nurseryworks Story time rocker was 50% off! This never happens to me. So we got in the brightest orange color I have ever seen to go in Marcelo's room. OK maybe I should have been a bit more practical and gotten it in a neutral color so we could put it in any room but that would have made too much sense.

I really like this rocker for the purpose it was made for, "story time". It's not such a good rocker for nursing for obvious reasons, low back, low arm rests. I'm still on the look out for the elusive modern, fully upholstered glider for nursing and waking up at night that is not a thousand dollars. But this rocker makes it so nice to be able to sit all together and not make Sofia feel like the third wheel. She was so excited for it when it arrived and she totally loves it too and it doesn't even matter to her that it's not in her room. Maybe this will answer to people when they walk in our house and ask us where the big flat panel TV is they expect to find.